Hepatitis C Support Group

Hepatitis C is a blood-borne viral disease which can cause liver inflammation, fibrosis, cirrhosis and liver cancer. The hepatitis C virus (HCV) is spread by blood-to-blood contact with an infected person's blood. Many people with HCV infection have no symptoms and are unaware of the need to seek treatment. Hepatitis C infects an estimated 150-200 million people worldwide.

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jansumner55 01/28/2015

I never thought I would ever wish to be taking Riba again but ...I am not holding out hope for Harvoni .. tho .I am still plugging away at appeals and stuff .
But I would at this point settle for Solvaldi/Riba I really dont want to do INF EVER again and the latest I heard from the Hep c doc were" maybe we can get Sol/Riba /Inf for 12 weeks
Any help here ??? Everything I'm reading lately says for Geno 3's to do Sol/Riba x 24 weeks not using Inf.

I was soo sick on Inf and it nearly caused me to bleed out ..
.
I have stage 4 cirrhosis and stage 2 varices with some slight ascites ,I also am in remission from colon cancer at the moment ,
I want to be sure what treatment to insist the doctor give me if and when I get approved .. so its
1... Harvoni x 12 weeks (not really likely)
2 Solv/riba ..x 24 wks
3 Sol/riba/inf ..x12 wks
Obviously I want Harvoni but is not approved for geno 3's in Canada..
Sol/ riba and the triple have just been approved for geno 3's but not funded for anyone with no insurance ... I am fighting this !!
Any thoughts anyone.. My enzymes ..Ast is elevated but the other 2 are holding within normal (I dont know how lolol)
INR is 1.4.. platelets.. 51 and bad anemia blah

and the GOOD news I am finally starting to recover from my near fatal car accident last May I can get out and about and Live again ...when the hep c doesnt floor me .. ho hum !!!
.

Type0 01/28/2015

Hey there

Not often I get to talk to someone with Gen 3. If you dont mind me asking, what is your age group? They say, Gen 3 is very aggressive, I dont know what to expect. How does it get so bad- how long do you have it?

I dont know the Canadian system. I am refusing taking INTF or Riba. My heart would not handle it. I have no interest in Harvony. I heard it might work in Gen 3 and that the reason it was not approved is because they did not provide enough study data. But I did not see any results of trials that would show that Harvony has any use at gen 3 at all. I wish it was.

I am awaiting for Daklinza approval or upcoming new Gilead combination pill Sovaldi/GS-5816. It should be approved in the US late 2015-early 2016. This should have good clearance rate. There another one I was reading about, so if you can wait another year... but sounds like you may not be able to.

jansumner55 01/28/2015

Hi there TypeO I am 60 this year ..I've had hep c since I was around 20 ,so almost 40 years I seemed to do fine with it until I hit menopause at 50 ... no cirhosis or really any real problems till then ..since then in 10 years I have gone rapidly from ok.. to barely hanging on ... .It didnt help getting cancer 2 years ago ,and I am really fighting to get Harvoni or even Solvaldi and Riba ..I do have an enlarged left ventricle and a mitral valve prolapse due to the constant anemia . But I do get out each day and excercise 3x a week and keep as busy as I can ..I do feel tired and crappy a lot but I sleep when I need to and try to just carry on the rest of the time I will not give in to the dragon . I have never heard of Daklinza I will check th\t out .. there is also abbvie's Holkira pack not released for 3's yet in Canada .. WE seem to be way behind in Canada only Solvaldi is approved fro 3's here.. but there is NO funding
. though Harvoni, Solvaldi, Olysio and the Holkira pack are all aproved and funded for geno 1's .. Grrr makes me so mad !!! Iam fighting to get treatment I am not going to wait another year ...I need it now.. I am praying so hard and doing all I can to bug the health care system here to fund me
It is very aggressive !!!!

Glad to meet you... lonely three I guess I'm not alone any more lolol

Type0 01/28/2015

Did you mean VIEKIRA Pak? Gen 1 only. I do not have the info on- how do they call it... mercy treatment? Probably not a word, but it is for the patients that have less than one year of estimated survival- they should give you the drug. Daklinza is approved in Europe and Japan (for Gen 1) but it is pengenotypal, and may be if you can contact the company, they have a way to offer it to you, or- put you on trial. Look up Daklinza trials, because they were recruiting for Gen 3 particularly as they need it to get approval. There may be a way. Keep me posted about what you find out. Here is the link, check it out and then check all links on the right. http://hepatitiscnewdrugs.blogspot.com/search/label/GS-7977%20now%20Sofosbuvir%2FBMS-790052%20now%20Daclatasvir
And here is 5816 article http://hepatitiscnewdrugs.blogspot.com/search/label/Sovaldi%2FGS-5816

There were articles from 2014 Liver meeting- look it up in the links on the right.

jansumner55 01/29/2015

thanks for the links ...It is called Holkira pack here in canada
its the same thing as the Viekira pac and yes after I checked it out it is only geno 1's
I will keep researching Daklinza thoe my doc does not want me to try and wait that long ..
I am looking now for the Daklinza contacts Thank TypeO

Type0 01/29/2015

Check all the links on the pages I posted. Here is one clinical trial that I noted: https://clinicaltrials.gov/ct2/show/NCT02304159?term=BMS+%26+Hepatitis+C&recr=Open&no_unk=Y&rank=10
But it says, US, California. Not sure if there any way to get on it from Canada.

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