Hep C Discussion Forum

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!

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. 

 

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 

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

 

 

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! :) 

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

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.

 

 

 

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 :) 

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

big hugs,

Syd

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!

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

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

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.

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!

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 

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.

Hi Jane and Phil,
I was diagnosed last month. Like everyone, I was very upset at first. Now I'm a lot less emotional about it and am thinking of it as a new challenging project. I'm taking one step at a time and hope to start treatment soon.

The day I was diagnosed, I went out and bought new nail clippers, razors, etc for all of us (I have two daughters, 18 and 12) and am keeping mine put away in a drawer so no one accidentally uses them. I told my daughters about my diagnosis, and about a few safety rules we need to follow. Then I told them about the many many things that are NOT risky. And I assured them that nothing really needs to change and that I will be just fine. I found that talking to them about it helped ME a lot. I started to feel rational about it, more in control of my health instead of a victim.

With some hesitation, I will tell you that I contracted the disease from my husband of 17 years, and we have both been monogamous. I am sure I got it from him because I have no other risk factors, plus we both have Genotype 3b, which is not that common here (I'm in the US). But don't let this worry you! I think most monogamous couples have nothing to worry about. My husband and I had been married for a few years when he was diagnosed. I was really worried I had caught it from him because we were in those wonderful young lusty years of our relationship and had *lots* of unprotected sex (with each other). But I tested negative then, and continued to be HCV- when I tested every couple of years...until now. Now that I look back on it, I think both of us entering middle age put us at a small risk that didn't exist previously. (TMI warning!) I am just past menopause, and things are dryer, thinner, and less elastic down there, which can lead to small breaks in the tissues, even if they can't be seen or felt. For my husband's part, he began needing longer, more "active" sessions, as many men do as they pass out of their youth. Again, there can be small breaks in the skin even if you can't see or feel them. I can see how blood-to-blood contact might have happened. I've never read anything on increased risk for older people for these reasons, but it makes sense to me. I think there should be some studies/surveys done to test out my theory. If it's correct, perhaps older couples where one is HCV+ should consider whether unprotected sex could be starting to be risky for them.

Sorry for rambling, but I wanted to address this issue because there's a lot of conflicting info out there on HCV and sex. One source will say that you're perfectly fine if you're a monogamous couple; another will say, "oh but there's still a small risk." What's a concerned couple to do? I think it might be helpful if, instead, couples are told that Hep C is NOT spread through sex. but to be mindful of potential blood-blood contact and take appropriate measures if you think it could be a possibility.

I hope that is reassuring! And welcome to the group.

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.

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

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

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.

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

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.

Do tell tig! C.