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Author Topic: just dignosed 6 months ago  (Read 10202 times)

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Offline Si

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just dignosed 6 months ago
« on: March 18, 2016, 10:19:47 am »
Hi guys my name is Simon and I come from the uk. I have read many stories on here some are uplifting and others are utterly horrible. When I had some blood tests taken the nurse explained I had hep c which I know I got from a tattoo that was done by guy I used to live with, I know it doesn't matter how I got it. Upon reading into more about hep c why the hell are is the no awareness about this disease in the uk? When the nurse told me my diagnosis she explained that it was nothing to worry about and there is treatment available ....after a couple of months i did my own research. After reading as much as I could about it, I was in shock about the progression stages etc. and horror of treatment stories. I have gone into deep depression with big dollop of anxiety. i have had a liver scan with no sign of fibrosis or cirrhosis also had blood tests to determine the geno type and to talk about treatment options on 24th march..i must admit hep c is all i think about. But the thing that keeps me going is knowing there is a cure..i have come here for support as i don't have a good support network, I have only told my older brother who is doing his best to comfort me. ps don't drink alcohol even tho i get urges to get off my face lol     

Offline gnatcatcher

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  • Posts: 1,372
Re: just dignosed 6 months ago
« Reply #1 on: March 18, 2016, 11:40:32 am »
Hi, Simon, and welcome! It sounds like your hep c is caught early (much earlier than mine), since your scan shows no sign of fibrosis or cirrhosis, so your treatment (which will depend on which genotype you turn out to be) may turn out to be shorter than average. For example, I took twelve weeks of Harvoni because the FibroScan came out as F4 cirrhosis, but a relative needed only eight weeks of Harvoni.

It's true that some people have severe side effects, but again the percentage will depend on the genotype-specific treatment protocol. I'm one of many on Harvoni who had very few, very mild side effects and even had the positive side effect of the "Harvoni high": lots of extra energy. Please keep in mind that forums hear more often from people having a rough time than from those having an easy time.

There were two others here from the uk, but they were both cured a while ago and AFAIK haven't posted recently. Quite a few Europeans, Australians, and Canadians are on these forums.

Please keep in touch. Once you know what treatment you'll be on, those who have been on the same treatment will be able to provide answers to your treatment-related questions. And we're all here to cheer each other on and commiserate if things get rough.

Gnatty
9/29/71 transfusions
HCV genotype 1a
7/09/15-9/30/15 Harvoni

Before treatment:
Viral Load 9,490,582
FibroScan 19.5 kPa [F4]
ALT 262
AST 217
ALP 183

Most recent:
VL still UNDETECTED (SVR 102)
FibroScan 7.6 kPa [F1-2]
ALT 15
AST 20
ALP 85

Offline NYCHEPCMAN

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  • Posts: 63
Re: just dignosed 6 months ago
« Reply #2 on: March 18, 2016, 11:44:25 am »
Welcome Simon and you came to the right place!

But from the sound of things it seems like you are handling things quite well and no liver damage. Do you have your liver #S (AST, ALT, etc)?

No more horror stories about treatment. I have 1b genotype and have been on Viekira Pack since February 3rd - so far no side effects and I was undetected by week 4....

Only complaint I have is terrible seasonal allergies which may be caused by no longer having Hec C or just simply NYC having a lot of pollen this year. Keep us posted.
GT 1b
VL 1,237,287
Diagnosed November 2015
alt 66 ast 35
F2 fibrosure
2/3/16 Started 12 weeks Viekira
Week 4: Hep C virus by PCR   <1.18 NOT detected, <15 not detected IU/Ml AST 18, ALT  25

Offline KimInTheForest

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  • Believe in yourself
Re: just dignosed 6 months ago
« Reply #3 on: March 18, 2016, 01:29:47 pm »
Welcome Simon! Most of the horror stories of treatment are from "bad old days" with interferon. Today's new direct-acting antivirals (DAAs) have minimal side effects, and for some people no side effects. A small percentage of people do have more serious problems with the new drugs. But the odds are greatly on side that you won't be in that category. And the new drugs have very high cure rates (upwards of 95%) and usually just involve 12 weeks of pills. So really, you got this! You are going to be cured, and without any lasting damage to your body.

Some of us who took the new drugs did also need to have one of the bad old drugs (ribavirin) added to the combo. Ribavirin is not fun, but it is doable for 12 weeks. And the good news is that ribavirin is being phased out (as interferon already has been) and is being replaced with newer drugs with minimal or no side effects. So I really don't think you will have any problem with treatment.

Just keep working your way through the necessary medical appointments and tests to determine your genotype and then get a prescription and get started on treatment. You will be cured before you know it!

good luck!
kim :)
« Last Edit: March 18, 2016, 02:13:08 pm by KimInTheForest »
Kim Goldberg (Nanaimo, BC)
1970s: Contracted HCV (genotype 3a)
2015: Cured with Harvoni + ribavirin (12 weeks)
MY STORY: https://pigsquash.wordpress.com/2016/01/28/undetectable-my-hep-c-story/

Offline Si

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  • Posts: 3
Re: just dignosed 6 months ago
« Reply #4 on: March 18, 2016, 01:47:34 pm »
Thank you guys for your support and kind words..I am only a young man of 28 and wanting to get married and have children at some point when I find a lady..know any one? Lol but I have been researching and I am armed with information. The only thing that conserns me is the stigma attached to it.. I am glad i joined up hear for weeks I have been reading posts it seems like I have come to the right place :)

Offline KimInTheForest

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  • Believe in yourself
Re: just dignosed 6 months ago
« Reply #5 on: March 18, 2016, 02:11:49 pm »
The only thing that conserns me is the stigma attached to it.. I am glad i joined up hear for weeks I have been reading posts it seems like I have come to the right place :)

Yes, the stigma surrounding Hep C is very real, unfortunately. It shouldn't exist. But the reality is that it does exist. And so everyone with Hep C needs to give thought to whether they would feel empowered or weakened by outing themselves while they have Hep C. Some people out themselves and say 'to hell with small-minded ignorance'. And good on 'em! But the vast majority of people with Hep C feel it is in their best  interest to not disclose widely, due to the stigma and ignorance and misconceptions. You will be respected here whichever choice you make because we all know what is at stake. I had Hep C for 45 years, and I knew for the last 20 years. I told virtually no one in that period of time. And for me that was the right choice. I stayed stronger and healthier and happier because of it. But as soon as I was cured, I 'outed' myself so that I could tell my Hep C story and do some good with it in terms of public education.

best,
kim :)
« Last Edit: March 18, 2016, 02:14:23 pm by KimInTheForest »
Kim Goldberg (Nanaimo, BC)
1970s: Contracted HCV (genotype 3a)
2015: Cured with Harvoni + ribavirin (12 weeks)
MY STORY: https://pigsquash.wordpress.com/2016/01/28/undetectable-my-hep-c-story/

Offline Jo-Anne Hiscock

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  • Posts: 7
Re: just dignosed 6 months ago
« Reply #6 on: March 18, 2016, 03:15:52 pm »
Hi Simon:   You are very fortunate to have found out now that Harvoni is the pill for Hep. C  as there is a big difference in this treatment and the former meds with interferon and ribavirin which I had to suffer through in 2004-2005.

I have had Hep C for 43 years this month due to massive blood transfusions,  I am genotype 1, have had prior unsuccessful treatment and have fibrosis (cirrhosis)  my number on the ultrasound scale they now use is 17.  I am now 78 years of age. 

The harvoni will be your saviour.  Do not be afraid.  There are no symptoms for Hep C
that is why  you were not diagnosed prior to now.  No doubt your Dr. did not know you had a tatoo.  People are still getting tattoos and think nothing of it but if it is not a used needle, then it is from reused ink.

Get yourself settled down and be prepared to win this one.  Best wishes to you.
From one who has suffered to a treatment that you won't have to have.   I am on harvoni into my 8th week with only one small setback.  Otherwise I am fine.

Jo-Anne

Offline Si

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  • Posts: 3
Re: just dignosed 6 months ago
« Reply #7 on: March 18, 2016, 03:53:17 pm »
Unfortunately havoni is not available in the uk.I may be sounding impatient but out of everything I have heard I think the nhs should fund it asap. I see so many success in treating it with havoni. I won't be telling anyone about my hep c apart from the people that really care about me  that can offer me support. I won't let this dragon beat me..I know I need to change a lot my lifestyle and diet but I have been looking at supplements and reading about meal plans. I've noticed one thing though looking at the foods and stuff nearly everything has salt and suger in..need to find a meal plan that's affordable also wanting to get back into my spirituality. But I have other issues that stops me moving forward but day by day I am rebuilding my life after a family meltdown.
As to you Kim I read about your hep c journey and you are truly an inspiration to me

Simon

Offline Mugwump

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  • My number of posts means nothing, piscor ergo sum!
Re: just dignosed 6 months ago
« Reply #8 on: March 18, 2016, 04:01:21 pm »
First diagnosis is always a dagger Simon. It was much harder years ago when the public was not even aware of the nature of this disease. I can tell you that I have fathered children and not infected my wife and that this is the nature of HCV which is not easily transmitted in relationships.


Above all be kind to those who do not have an understanding of this disease. We, like you have the self-righteous individuals who usually have right wing leanings that feel that this disease is a disease of the gutter. Unfortunately some of them wind up in power and their selfish mentality can make things difficult and even obscure the truth about this and other diseases.


Above all fight for your right to be receive early treatment, learn about the types of this disease and keep on top of what is happening to your liver. Bravo that you are not drinking. I wish that I had not post diagnosis. I am now 63 and cured of this disease, I am certain the progress of this disease to cirrhosis would have been slower had I gone a little easier on my liver and not imbibed.


All the best in receiving treatment soon and hearing the uplifting words SVR cured.
Eric
Caution shameless self promotion below :-)
https://www.hepmag.com/article/eric-reesor-27742-782589663
DING DONG MY DRAGON (HCV) IS FINALLY DEAD!

Offline KimInTheForest

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  • Posts: 1,972
  • Believe in yourself
Re: just dignosed 6 months ago
« Reply #9 on: March 18, 2016, 04:13:28 pm »
Depending on your genotype, Simon, you may not even be a Harvoni candidate. If, for example, you are Genotype 2 or 3, then Sovaldi+Daklinza would be the ticket for you. I don't know if those are available in UK.

But if the drugs you need to cure you are not available in UK, you can always go with the worldwide Redemption eTrials currently underway via fixhepc in Tasmania, Australia. Participants purchase generic versions of the correct drugs for their genotype, with a 12-week course of treatment costing $1,500-1,600 US. The drugs will be shipped to you. Many people are now going this route to get cured. However, it is always best to first exhaust every possibility to get your own health insurance to pay for the drugs in your own country. Website for Redemption eTrials is here: https://fixhepc.com/home/redemption-etrials.html

kim
Kim Goldberg (Nanaimo, BC)
1970s: Contracted HCV (genotype 3a)
2015: Cured with Harvoni + ribavirin (12 weeks)
MY STORY: https://pigsquash.wordpress.com/2016/01/28/undetectable-my-hep-c-story/

Offline Jo-Anne Hiscock

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  • Posts: 7
Re: just dignosed 6 months ago
« Reply #10 on: March 18, 2016, 05:54:54 pm »
Sorry Simon:  I guess I was mistaken but I thought you had left the UK for Canada or U.S.   As far as I know unless you have insurance  or are 65 or over you will have to pay for the HARVONI .  It is very expensive.  You seem to be managing your Hep C very well.  Be very careful of so called things that can help you.  Many Herbal meds. which are not under the FDA will not help and may  hinder.  Be sure to get competent medical help from a Specialist in Liver diseases.  I wish you all the best in your quest for treatment.  J

 


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