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Post Info TOPIC: Newly diagnosed New to forum
Groupergetter


Guru

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RE: Newly diagnosed New to forum
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Hi Jane, I'm new here as well and just started treatment.  Have been through the Interferon and Riba, got my numbers down while on treatment but no SVR.  Re-tried a second time and didn't make it.  

Please give your attention to what mallani says below.  In reading on this forum, he has much personal and professional knowledge in dealing with HCV. There are new meds out there, with more on the way. Whatever course you follow good luck, and best wishes for complete recovery. 



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1b  Int/Riba relapse @ 48 weeks.  Stop tx Peg Int/Riba 12 weeks ill. Relapse S/O 6/23/14 :(   Started Harvoni 11/12/14  EOT 4/28/15.  EOT+4 UND :)  SVR! 8/4/15  :)     Thankful for every morning.
globetrotter


Senior Member

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Hi Jane

I fully understand where you are at right now....I was diagnosed last June and was shocked, frightened and numb with the diagnosis and reading 'snapshots' on forums led me to just see the negative side of treatment.Once I had found a forum I liked, i.e. this one, told people of my experiences at the beginning, the support and humour made me realise that I am very lucky to be even given the chance to clear this pesky little number and that at any time I need a friendly ear or kick up the butt someone is here who is in the same boat or finished/finishing the journey.

I am on RIBA, Peg Interferon and Incivek and have learned to pace myself and you soon find what routine works best for you and become quite an expert in managing any side effects, I also tell people I have anaemia to those I don't wish to give the full explanation to. My friend did Int and RIBA and worked in a manual labour job and even went surfing some weekends.

I haven't noticed any aggression particularly, get frustrated more easily and tears at random moments which I have learned to laugh at now, and as my husband pointed out ..has dealt with these emotional cycles on a monthly basis for years biggrin

Good luck and you have joined a wonderful support network here nothing ever seems to be too much trouble

Sally



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51 year old Geno type 1A,  possibly 30 years HCV. HBV detected but currently dormant. viral load over 1,000,000. Started triple with Telaprevir Nov 2013 for 48 weeks.

VL week 4 -179,

VL week 12 -50. 

VL WEEK 24 -UND
Gracie


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Hi Jane,

I am on the incevik triple therapy (RIBA, interferon, incevik). As far as work is concerned, I've only missed one day so far and am in week 11. With me, I feel best in the morning up until about 2-3 pm. So I try to do most of my work that involves complicated things in the morning and take the last hour or two for smaller easier tasks. The eveings are spent relaxing and rebooting for the next day.

The rage hits for me more like emotional shifts. Get frustrated easier. Cry easier (especially sad commercials, lol, they really get to me now)... Lots have had great luck starting or using antidepressants to counter this symptom.

I told everybody at work I've been struggling with anemia so they know why I'm more tired, have lost weight and am pale at times. They are all ok with it and gets me out of doing anything too tiresome.

It's been annoying but very do-able. A journey to health. If your lucky enough you can get a 12 week program. They don't offer them here where I live yet, so it was either this or wait for a couple of years, and I was ready to face this and get rid of it so forged ahead. Good days and not so good days, it's a cycle.

You can do it and everybody here is great for advice, encouragement and some laughs right when you need them!

Welcome to the club!

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  1. Gracie

1A. Previously treated non responder Rebetron in 2000 And Incevik in 2014 with a breakthrough at week 12. Fibroscan 15.5. VL 6,000,000. Finished 24 weeks harvoni on Dec. 19, 2015. SVR. Latest Fibroscan 8.8.
mallani


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Hi Jane,

Welcome to the Forum. I'm in Brisbane, and have been lucky, as I have cleared the virus with Interferon, Ribavirin and Victrelis.

Let us know your Genotype and I can tell you what treatment options are available in Australia. I presume you're having a Fibroscan to assess your liver damage, and this will give a good indication of how urgent treatment is, and what treatment duration is best. The Viral Load and Liver Function Tests are also useful to have. Keep us informed. All the best mate.



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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
redfrog10


Newbie

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Hi Tig!

Thank you so much for your reply!! And the warm welcome - yes, I will be back - prepare to get sick of me!!! 

As it is all new to me, and my final tests are not complete - I don't know what genotype I am etc.  I live in a rural town and have to travel to get the scan done and since starting a new job - I have had to bide my time a bit on that - not a good career move to have a day off - one week into the job!!  However, once I know I will of course put it out there on the forum. 

It is not so much hesitation in telling friends, it's just that I have only been in this area a short time and people I know are rather new.  My long standing friends are a long way away.  (Am sounding somewhat pathetic!!!!ha ha)  Nevertheless, I see everyone here has had their battles and been brave - so as we say in Aust.- I'll just have to take a spoonful of cement and toughen up!!!

Thanks again, and talk soon!

Jane



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Tig


Admin

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Hello Jane,

I'd like to welcome you to the forum! We have a few members from Australia that will be able to make some "home town" suggestions about treatment opportunities down under. You mention a probable treatment combination of Interferon and Ribavirin. There are several new drugs, as well as some recent offerings that include those two medications. If you have any test results, liver function tests, genotype and biopsy/fibroscan results, that helps us to give you better informed opinions. So when you find out, feel free to share them with us if you like. I took the triple combo of Interferon/Ribavirin/Victrelis for genotype 1A. I'm currently 12 post treatment and waiting on results to see if it has remained undetectable. We've got many successful members on the older treatment regimens and are just witnessing treatments with the newer drugs like Sovaldi and Olysio. We still see the use of Ribavirin in most courses of treatment but in the next year there will likely be changes to that as well. There are a lot of good things happening in the treatment of Hep C now and we're all very hopeful and thankful to finally see headway being made.

You're among friends here and we all understand the hesitation to tell people about this. It's a choice you can make when you're ready to make it. There is no pressure here to do or say anything. It's a very friendly place and the support I've received here has been priceless. I know you'll be met by many good people here and you'll feel right at home in no time! As you move forward into treatment, we'll be more than happy to explain the things to expect and how to deal with the side effects. Don't worry about everything you read! This is a manageable course of treatment and we've got tons of tips and suggestions to make the journey easier. Talk to you soon!

Best,  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!

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redfrog10


Newbie

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Hi all!  I am in Australia and have just been diagnosed am about to start treatment soon and believe it will be Ribravirin and Interferon .  I am to have a fibrosis scan yet to ascertain extent of liver damage - and just recently had blood test to determine genotype, so I do not know much at this point.  From looking through the forum, I'm starting to freak out as  some members describe some pretty heavy side effects (viz. anger bursts in particular) from Rib.  The other drugs mentioned do not appear to be avail in Aust. so I have not been given any alternatives except Rib & Int. combo.  My prime concern is that I am 2 weeks almost into a new job and this involves teaching - mostly teenagers, I also have to do a reasonable amount of driving with my job.  At the best of times, I am not the most patient of drivers but usually contain myself.  Some of my students are very slack about doing their assessments, so I fear going off the handle and loosing my job.

Sadly, I have no immediate family and have no friends that I want to share this with.  I wonder if I would be able to hold my job down - I would really welcome opinions and advice from anyone who has been treated with this drug combo - in fact, I'd welcome hearing any experiences or suggestions that can be offered.  As you probably guessed, I am a little in the dark and yep, a bit scared too!!

Thanks!!

 



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