Thanks all sooo much! Second dose just taken finally feel like a light at the end of the tunnel! I'm now off to start a new thread in the on treatment section if I can figure it out lol 

Hey Jane,

You can start a new thread in the On Treatment section now! We can follow things there. You're no longer considered New around these parts!

Good luck J n' P! You're both on the right track to success. Be sure to stay in touch and let us know how things progress. It should be an easy ride, sit back and prepare for victory!

The Epclusa Bullet Train is leaving the station on track 01-ALL ABOARD!

Yay, yay, yay Jane and Phil,

Day one has finally arrived! Happy day!

Don't worry a hoot about jumbled names, I do it ALL the time! We are just one big happy epclusian family round here. Jaggles and I could probably wear the same shoes!

I'm sure she won't be far behind you in her start.

We are all so lucky to be able to get epclusa nowadays. I can't wait to see you all cured, just like me.  C.

PS - tons of water. 

Meant jaggles not canuck! Sorry so many names to remember Hahaa! 

Thankyou so much for your thoughts and hugs well today's the start day so we shall soon be on our way to being free of this I hope x 

I hope you have had some success canuck I can totally relate to the worry with the kids we were lucky they weren't affected just Phil and I so that was a huge worry off our minds shall keep you all posted on how our appointments go and thankyou all for being here for us much love! 

J and P 

I remembered Jill mentioning this recently and thought you might like to read the article. The second link is part of a bigger section in the NICE sanctum. I offer it as a resource to help you find assistance within the NHS system.

NICE Approves Epclusa

NICE/Epclusa Patient Info

NHS Choices Hep C

firstly, thanks Canuck for directing me to this ...such fantastic news. secondly, Jane and Phil, congratulations...you are getting the best there is from what I have read. I was so sorry to read your story it made me cry...i. Am in U.K. Too....when I got my diagnosis I was more terrified that my partner and kids, now adults, may have got it from me. I think there is so much uncertainty about this kind of diagnosis and it is actually terrifying. 

such good news that you are finally finding your way, telling people who matter and supporting each other but most of all getting treatment sorted so quickly and of the best kind. I am going to make some noise today and make lots of calls and try and get some answers. Once again, so happy for you jane and phill.....keep us posted ...we all care here...the people on here have actually been my life savers at times and I know when ever I need a rant or chat I'm not alone here.

big virtual hugs to you both xxxxxxxx

J

Jane and Phil, I'm sure liking the sounds of this team effort, I will be happy to see you two get started, and to know how well this is going to turn out for you!  C.

Ooh forgot to say on the fibro side all good no long lasting liver damage is difficult as we both have diabetes too so this is kinda causing a couple of problems but nothing major so here's hoping treatment goes to plan and we come out the other side just as strong as ever! :) 

Thankyou all we were so happy to be approved for this drug,  we didn't have to fight for it or anything our doc just got it sorted for us we really are very lucky to have the treatment and resources we do I hope jaggles sees this too and has a smooth rd to recovery too thankyou all so much!

Lots of love both of us :) 

So good to see the words Jane and Phil again and with terrific news

Hi Jane (and Phil)!

This is such excellent news, I was so delighted to read your update!  Did you have to insist on getting Epclusa or did your doc just get it sorted out for you?  However it came about, this is the best possible tx option for you both! 

Thanks for checking in, I was wondering how things were going wth you!

Take care. ..keep us posted! 

Hey Jane and Phil!!

Boy am I EVER glad to hear from you two again. Been frettin' about you.

The only thing that makes me happier (than hearing back from you again), is your WONDERFUL news!!, that you will soon be started on treatment, and I AM ABSOLUTELY ECSTATIC you are both going to get epclusa!!!!!

Yay UK, yay WALES! Yay your doc! Good for you!. I am so glad you do not have to do any of the older regimes that were offered just not so long ago.

VERY pleased for you!!

I can't wait now for Jaggles to see this post, as she is awaiting epclusa treatment in the UK too. Tonight I could not tell her whether I knew of anyone (for sure) who has been approved for it as of yet - now we can tell YES-IN-DEEDY!

It is an extremely effective regime and surely will be much better tolerated than the riba based regimes. You are having some good luck here and good timing, you will do well, and will soon have this HCV behind you.

Wonderful news! Please keep us posted. How have you two been faring in the meanwhile? How are your fibrosis levels and such now.  C.

Hi Jane,

Welcome back! Glad you updated us. You're right, Epclusa is an excellent treatment drug. High rates of success and a low side effects profile. You're very fortunate to get it. We are starting to see more use of it and that's very good news. Stay in touch and let us know when you get started. Good luck!

Heyy all its been a while just wanted to check in with you all,  well we are both due to start treatment the 7th of March with a new drug here in the UK called epclusa apparently a lot less side effects than older treatments so here's hoping! Hope you've all been taking care of yourselves :) 

Hi Jane,

Thanks for the update. We have been wondering about your latest news. Sounds like you've got a great plan established. Just think, this time next year (or sooner), you will both be Hep C free! Stay in touch...

So glad your confidence was misplaced. I do do hope treatment starts soon.

big hugs,

Syd

Thankyooou for the tune :) and thanks to you all for keeping me sane sorry I haven't checked in for a while life has been so busy as usual and thankfully every day we kind of still feel normal lol  

I have had my appointment thru for the 6th of October for the same specialist Phil has been seeing so am hopin we will both move forward with treatment very soon,  hope you are all doing good and are happy :)

Much love 

J and P

I'd say I told you so.... but I didn't.

I forgot but I have an excuse AND...  I even have a note!

Ok ok I wrote it... but I have one!

Jane y'all are doing great! Like scales falling from the eyes!   Friends are just that. 

Calls for a JimmyTune...

https://www.youtube.com/watch?v=pDIQ7Otf1mw&index=47&list=PLxXmNu3e7u8L2QwXe_YnIB37hkjjEZkCc

<sigh>

Yup!

Hello Jane,

I`m very pleased to read this, I can imagine what a relief it must have been to share your `secret` with your best friend!  It`s so important to have people you can trust to confide in when you`re feeling anxious and going through a stressful time, and a true friend will always be there for you.   I understand your reluctance until now to talk about it, we can never be sure how people will react, although from my own experience most people are more accepting and open minded than you`d expect. 

I only told a very few people before and while I was on treatment, but afterwards, and especially once I knew I`d cleared the virus, I became a lot more open about it.  There`s only ever been one person who had what I would say was an `unpleasant` reaction, and I could deal with that. 

Good going! 

Love what your friend said. I like her Glad you took that risk Jane. 

Delightful, Jane.  You must feel better already.  Good friends are like medicine itself. It sounds like you made a good choice. Glad to hear this.

Awesome Jane! I am so glad you and your friend had a chance to talk. True friends will stick by you no matter what.

Hi Jane,

Having friends to talk to is an important part of getting through treatment. I'm glad you and your good friend had a chance to talk. There's nothing better than a friend with a caring ear. 

Aaaw, Jane - THAT's so nice!! I am glad you made that happen and the your friend is indeed a very good friend. I wish I had been able to do something like that too. Maybe I will, one day. My best friend is my partner and he was key in my support, but as well, all my other best friends/confidants/advisors and support system ... is right here! I too was in a hard lonely place for a while - it does get better as you go along. Good for you for being brave. C.

Thankyou all so much,  well I went for a couple of drinks with my most trustworthy friend and I told her...... Amd Woww!! Did she look at me daft and say can't believe you've kept this to yourself all this time! And I don't know wether to hug you or punch you for being so stupid lol..... Well was a weight of my mind to share it and feeling positive thankyou all once again 

Jane

Hi Jane,

I told my Mom and my daughter. I also just told my bosses at work. We all have worked at the same place for the last 16 years. No one understands what it is actually like, but at least they are supportive! I don't talk about it much with anyone except with everyone here. 

We all feel like that at times. Try to think about how healthy you will be. That is what is driving me. After having this for the last 36 years, it's going to be incredible not having this in my body.

You can always talk to me!

Hi Jane,

I left a reply to the privacy question on this thread on July 24, so will direct you there.

Nobody is to blame. These are simply the things that happen to people. I've been pretty lucky in life, but people get all kinds of viruses, lose limbs, loved ones, and have accidents. So why not me? Everybody gets hit with something some time . In that light, you have a CURABLE VIRUS that you are going to live through and discard. Good things will happen too. It's still personal and nobody else can feel it like you do, but you can also experience a victory.  Believe me, I don't mean to sound unsympathetic at all! You've been shaken hard, and I am so sorry you have to deal with this.  But, you will.

Don't worry about the wobbly moments.  They are part of the process.  They are inevitable.  The things you hate feeling a going to go away, too. You'll be amazed what you can live with.

I do hope you find someone trusted to talk to.  Spouses are not always the best, too close.  Selfish? NO. It's got to be touchier when you both have this.  You didn't, and Phil didn't do anything wrong!  It's just life, so hang in there. No guilt, no blame.

Looking back over my own posts, I was devastated.  I was cranky and uncertain, and I was a big baby, so I can't and wouldn't tell you to snap out it. I'm just reminding you, lovingly, that there is a bigger picture, and you are in it, my dear.

You can talk to me and us any time.

Deep breaths,

Cheddy

I've been re reading all your posts/replies and filling myself with more motivation/optimism it's so hard sometimes to keep the brave face going...... I sooo hate it when the why us question pops in my head and phils blaming himself for being poorly on our honeymoon and that's where he got it etc..... My inner positivity won't be dampened just getting more wobbly moments than usual.

Did any of you talk to your friends?? I don't have many friends I have a very small handfulof people I Consider friends and sometimes just feel like I need to talk to someone not Phil! Does that sound really bad/selfish?? Plus don't want to put my friends in a bad position by telling them.

Thankyou all you are all my lifeline 

jane 

Hi again to you too Juliet! Glad to see you post again, and your post here, good explanation. I posted to you over in your thread "New friend here - recently diagnosed" BTW. C.

Jane and Phil,

It was good Jill posted that (England/Wales/Scotland/Ireland) link for you.

It seems the drug choices are limited there, I find this so in Canada as well.

The only way I got Epclusa (sofa/velpa) in Canada was by entering a trial for GT 3a's. Even though (in theory) Epclusa has been "approved for use" in Canada, in practice, it is still not yet available to us. It was also approved for use in the USA, but there, they ARE already starting to roll it out and people are starting to get it by prescription from their doctors. Some countries will be slow on the draw to start using Epclusa, but i do believe this will become a preferred treatment for many people and many countries, it covers many genotypes. 

Tig posted a good link, but it shows American recommendations (but these regimes are the ones I most agree with) only because they are heavy on "preferring" velpa (and dacla) use for GT 2's and 3's (and other GT's too), over riba use and any interferon regimes. Compared to the American recommendations, I did not like what Wales/England had to offer "on the books". American/FDA recommendations are ever changing, and could be refined even more by next year. I imagine changes in recommended regimes are being considered in the UK too on a ongoing basis, I would hope.

AASLD TX GUIDELINES 

You have not had your fibroscan or ultrasound yet, you "might" lag (some) behind Phil in the start of your treatment (maybe not though), so, all the more reason in this pre-treatment/assessment phase to take the opportunities to ask both your specialist and your other family doc what your drug options might be, now (early), to see if you can qualify/push (if it is possible and advisable) for a interferon/riba free treatment, or not. 

I know it is daunting times right now, but I like your attitude Jane, that you and Phil will "tackle this like everything else - together". Hang in there. C.

Thankyou all for your support and advice both are gratefully received by both of us. I find each day we are trying to live normally but have our odd panicky moments,  thanks for the link Jill I'm going to check that out too all the info you have all shared with me has been soo helpful in my understanding of everything. 

Thankyou juliet for your reply there is a lot of conflicting articles about passing between partners but seems more common than people think even the gp and phils liver specialist both said I wouldn't have it..... Hmm but like I said to phil don't think over our 12+ years together there's anything we haven't shared and we will tackle it like we do everything else...... Together 

Sending you all our love 

Thanks to all of you for your sharing your support and advice 

Hi Jane,

Sorry about your diagnosis, I`m sure this wasn`t what you wanted to hear at all and you`ll probably need to take a little while to come to terms with it.  And throwing a wobbly is a perfectly acceptable reaction!  But as we`ve already said, Hep C is very treatable nowadays and at least you and Phil have both found out about your Hep C infections relatively early, which is a definite advantage over some of us here.

I imagine you`re the same genotype as Phil, assuming either that you were both infected from the same source or that one of you passed the infection on to the other, but that`s not necessarily so.  And please don`t be scared about a viral load of several millions, we wouldn`t expect anything else with an active infection... that`s quite normal.  Once you`re on treatment you`ll be amazed at how quickly those numbers come down!

So, as for treatment options, I imagine that as you`re in the UK, Wales in fact if I remember rightly, I`m thinking that you`ll probably both be offered 12 weeks of Sovaldi (sofosbuvir) plus ribavirin, assuming you`re also Gen 2.  You mentioned that Phil will be getting an all oral anti viral, so is that the treatment he`s being given?  We`re lagging a bit behind the US as far as treatment options are concerned, so I`m sorry to say that Epclusa isn`t yet available over here, but that`s ok... you`ll still have a very strong drug combo to do the job. 

I`m giving you this link to a handy treatment finder for people in different parts of the UK, showing the current treatment options available through the NHS, you might find this useful.  From the Hep C Trust website...

http://www.hepctrust.org.uk/nhs-treatment

You`ll both get through this so try to stay optimistic, and you have the good people on this forum to help you along the way, you`re not alone! 

Take care and keep us posted, and try to relax over the weekend... all the best, Jill 

Sorry to here your news Jane I am new to this forum. But what I have learnt from the members and knowledge provided by the forum that there is a huge amount of treatment options that are available to people with Hep C.

I am sorry to hear the news Jane. You and Phil will be there for each other as well as your friends here. Yes, ask about Epclusa. I asked my doc and he agreed. I know, it is a shock. I couldn't believe it either. However, this is the perfect time to get treated!

Hi Jane,

I am sorry for the news but happy you are so far ahead of the game with regard to knowledge.

In my case we first found out Carolyn had Hep C. To be honest I felt extremely guilty that she was infected. It was about a year or so later when I found out I also had Hep C. Strange as it may sound, I felt somehow better she was not alone with the diagnosis.

I do remember when we first found out we were like, "huh, Hep Who?" Completely ignorant and then we just walked away from it all for years. Then I got lined up for Interferon and RBV. Started doing some reading on it just before it arrived. Showed up one day at the door, I put it in the refrigerator and every time I opened the door there it was. Read a bit more and one morning I got up, walked to the refrigerator, opened the door, picked up the box, walked it outside and tossed it in the trash. Walked away for another few years and then I saw an article in the News about a "thousand dollar pill".

Started reading some more and the advancements were quite incredible albeit recent.

Spoke to my Doctor and asked him to hook us up with a good Hep-dude. He did, we went, I failed once miserably, she started, then I re-started and she is 19 days post SVR 12 and I am 21 days to my EOT + 12 weeks after having been found UND at EOT + 4 weeks.  Whew!

I am a 1a and she is a 1b so yes Geno-types can differ.

You and Phil have found out in the best time ever to find out if it has to be so. This will all seem like a blur before you know it, trust me on that, time flies!

JimmyK

Sorry to hear the news Jane but you are ahead of the game as far as education goes. One foot in front of the other. There are other couples that did treatment together (did not necessarily start and finish same time) but they will be a great support for you too. 

I'm not too sure yet if we're the same type but I'm assuming so seeing as they pretty confident it came from when Phil was hospitalised on our honeymoon In Tunisia,  is there any chance of having a different type?? I'm definitely the strong one of the family ( don't mean that disrespectfully) I'm the one who's upbeat about everything but tonight I've had a serious wobbly moment. 

Thankyou all for helping me soo much through all of this 

Jane

Oh, Jane.  That is unfortunate news.  I'm sure you are upset.  Who would not be?  Do you know yet if you have the same genotype?

Thankfully, there is a bridge across this gaping hole, and it is a big shortcut. You have only to cross one step at a time. The good news is, it is better on the other side!  Not knowing about this would be very bad so I'm glad you found out before feeling terribly bad. 

You are going to find some power you never new you had and you will very likely feel better after the cure - and there is a cure so you can fix this! I sure hope you can do it without a lot of side effects.

We'll be here to help you with every step. 

Warm thoughts and wishes to you and Phil and your healthy children.

Cheddy

Sorry for your news Jane. But now, you know where both of you stand, and can and will get it treated. Please do ask your doc about Epclusa specifically and all the choices that may be available to you through your doc(s). C.

Well results are back and not good news I too have it aswel wasn't given much more info just that I'll be referred to the same specialist as Phil so will take it from there, one thing he did say was virus was 12 million? But Im sure with phils specialist she said numbers in the millions are normal but not sure what it means,anyway thankyou all for being here for us.

J and P 

Heyy I hope yours goes down too phoenix got everything crossed for you,  I don't think they mentioned the name of a drug just that it would be oral antiviral, he had an ultrasound this morning and it looked quite good according to sonographer there was a couple of cysts on his liver but apparently everyone can get them and she wasn't overly concerned so roll on 4.20 pm and I shall have more info on my results 

Thankyou everyone hope you are all doing good too 

J and P

My fault. Still learning what all the test results mean.   I will be starting Epculsa soon. Still playing the waiting game. Sigh... I hope Phil gets the same treatment!

Sorry Phoenix, I mis-understood what you wrote below in the thread, when you said you were a GT2 fibroscan 3 - I thought you meant, your kPa reading (like Phil's) was also at 3.  Glad you straightened me out. According to the chart tig posted below your 10 kPa does put you roughly within the "F2-F3" zone, but on the lower end of the "F2-F3" zone. You have to be (aprox) over 9.5 kPa to change from being an F2 to being an "F3-F4", then, you would have to be over (aprox) 12.5kPa to be in the F3. You are in that weird "between" category "F2-F3" But there ARE different charts out there and the numbers do differ a little depending on who wrote them. 

Jane, Phoenix mentioned she will be starting her treatment with Epclusa - has your doc discussed with you what choices Phil will have? C.

My Fibroscan was F3 and kPa of 10  I hope mine goes down as much as Phil's!

Do tell tig! C.

Darn sure is better than mine!

Fibrscan score of 3. Wow!  That's a liver in better shape than most people without HCV!