Hi rightsaidfred,

Great post. Your garden sounds like mine.

Do I recall you are in England? London by any chance? I'm going to be there with a couple of people in April, 16th-20th,
We' re going to be making noise about hep C treatment, stigma etc. We'll be meeting up with the World Hep Alliance and doing some interviews.

Email me This email address is being protected from spambots. You need JavaScript enabled to view it. if you are around or would like to catch up.

This is the team, www.hepc-action.nz/about/#the-team

Thanks for this post. Pretty much every time I open this forum I think of Guy, and what he was like, and how the world needs people like him more than ever.

We started treatment nearly the same day, his first time round. He kind of towered here for his rational, compassionate style. And he slipped away with no comment on the hand he was dealt. Many people were encouraged through their dark days by him.

Just over a year ago, on the 22nd of January 2018 to be precise, our long-time moderator Gaj passed away in the Alfred Hospital from complications of Hepatitis C.

He was a friend, confidant, and supporter to many here. He was active on the forum for a long time, but I remember when his black and white avatar changed to colour the first time he got to end of treatment undetected...




Sadly that did not stick and we had to retreat and, at what should have been celebration time - SVR12, the undetected news was blighted by a shadow - the shadow of that went on to steal him from us.

Gaj was one of the good guys.

He's gone but he's not forgotten.

His name was Guy.

Guy's not the first friend I've lost, but, hopefully, he's the last.

Some years ago I lost a friend in a Hang Gliding accident. It felt like this then, and it feels like this now...

I still recall the night last year
The mate upon the phone
There’s something in the voice I hear
Just chills me to the bone

You hear ‘bout Nick Dillane today?
Comes crackling down the line
Such simple words, said in a way
Just knew he wasn’t fine

It seems that he was towing
In winds a little strong
And there’s no way of knowing
Exactly what went wrong

I hear the words wash over me
And a tear grows in my eye
Lockout…downwind…no release
No chance to say goodbye

Well it’s nearly been a year today
Since I’ve seen his smiling face
Still seems like only yesterday
That he stood here in this place

Well I know that I won’t see him
And I know that he is gone
But as long as I’m still breathin’
His memory will live on

So now I’d ask, you charge your glass
And just be glad we met him
Let’s drink to Nick, whose time has passed
I know I won’t forget him

Hello rightsaidfred,

Your name has always made me smile, largely because of the association with this:



As a gold label subscriber to the strand by strand grey ad falling out method, and a past user of the time-proven make it a #1 crew cut method....

Anyway, it's been awesome to help people make that leap of faith and share in the results.

I don't feel I've done anything special, other than do a standard doctor disease thing - here's a patient - here's a disease - here's a treatment - connect the f***ing dots. I have been both sad and disappointed that so few of my colleagues have done the same, despite overwhelming evidence generics = cure...

To everyone who took that leap of faith with me all I can say is thanks - we did it together.

I miss Gaj, every day, and wish we'd gone harder earlier. 20-20 hindsight and the same GT3 issues. He failed the first round, we cleared it second time around but his SVR12 came up with a "shadow". That f***ing shadow was not even an HCC. Is was another rare and aggressive form of Hep C related liver cancer.

Sadly he was not the first patient for whom treatment arrived too late. I wish I could have done more but we tried. The sad reality remains that for some patients, treatment will come too late.

It's been said before, but is worth saying again. If you have Hep C get treated.

Gaj added more colour to his Avatar the first time he went UND and EOT and he added this...



I just wish it could have been this for him



The first one is # dance, the other is # magic

F**k I wish we could make the magic happen 100% of the time.

Hello Stingray,

That's a great story. It took some guts to do what you did AND IT WORKED!

I've just had a look at my profile: I see that I first posted in February 2016 and finished treatment (24 weeks altogether) in July 2016. I have been very well since and it rarely occurs to me to wonder how life would have been if I hadn't taken the Fixhepc route to the cure.

Now that I pause to reflect, I can have a stab at answering that question: The NHS would have messed me about for about another year - my consultant's hepc nurse rang to book me in to her clinic in March 2017- and then they would have given me 12 weeks of treatment instead of the 24 weeks I did with Fixhepc, which may not have worked because I had genotype 3a and a fibroscore of 9.5 initially. But before that the disease would have progressed, of course, though we can't know how bad it would have become. I was suffering from constant fatigue, my digestion was very poor - I had symptoms which I thought were due to IBS - and was living on omeprazole. I had zero tolerance to alcohol - a few sips would give me a terrible hangover and any sniff of a steroid inhaler gave me headaches too. I am asthmatic and had to use something else. In short, life was bad and getting worse!

I am self employed and that's been the case for nearly all my life but it's unlikely that I'd have been able to work for that much longer. That would have been a huge problem because I like my work and need the money. I also need the self esteem that working brings me. Again, I have a large and beginning-to-be-lovely garden (it has been 18 years in the making and may be alright in another 10!) and a family of whom I am very fond, which includes my husband and two very beautiful but seriously naughty cats!

We never really know how events would have been but I'm sure life has been miles better than the alternative scenario.

The bonus has been that I've encountered some delightful and very dedicated people. You'll just have to get a new hat, Dr James, you must have outgrown several!

With love and my very best wishes to all of you,

RSF

PS Sometimes I think of a lovely man, known as Gaj on this forum. Very sadly he lost his battle with hepc but not before he had made his mark by encouraging and supporting so many of us here. Perhaps you'll pause for a moment and be thankful? R

Hello Anton,

During the first week of treatment the vast majority of the virus is killed off. I explain the feeling as being a bit like people feel in the days before getting influenza - not well, but not that sick - you know something is happening and may have fevers, headaches, muscle and joint aches.

The most likely reason for dark urine is that you are not drinking quite enough water to deal with the sweating. We do see dark urine in people who are really sick from liver disease but it's more likely to be that you are a bit dehydrated. Please drink an extra litre of water an see if this settles things down. You can have a doctor do a urine dipstick test and this will differentiate between dark urine from the liver and dark urine from dehydration.

Hi Stingray, welcome back and thanks for sharing your story. Back then no one knew about FixHepC, you took a leap of faith, and you got lucky. Right now, things are much better, no one has to take risks, anyone who does a little research will come quickly to the conclusion that this is the real deal. Glad to hear that you're feeling much better than before treatment, that's really awesome

Hi stingray,

I did a search and turned up these 2 posts from you:

fixhepc.com/support-forum/questions-and-...w-this-is-legit.html

fixhepc.com/support-forum/new-to-forum/1...s-a-skeptic-but.html

So it looks like you are a man/woman of very few words!

Happy hear you've remained negative but it probably time to relax. When you finished the tablets the medication took about a week to wash out of your body. At that point, any virus had a 100% treatment free environment to grow back in. The longest Hep C ever takes to "grow" is 6 months so you are so cured we don't need the word so anymore. There is only one word required...

CURED.

Hi All,

It seems like only yesterday I came across this site but I think it was like 4 years ago. I'm not sure if I was the first member but must have been close - there was SFA on the forum back then.

I asked a question like "How do I know this is legit?" and got some vaguely believable answer. I did a bit of a Google and could not find anything bad (good) and there was a little bit reassuring stuff so I think I thought something like "Fuck it if the medicine arrives and it doesn't kill me how much worse off could I be? Worst case - I've done a couple of grand." I guess the rest is history, but it went like this...

I did the treatment and felt better - I could tell it was working. It took a while to get round to being tested but that came back all clear. My doc tells me Im cured and I feel like I am but I guess I will probably test every year or so - just to be sure.

Anyway, it worked for me. Maybe it will work for you. I feel a hell of a lot better than I used to.

Hello tototo,

Sorry to hear you're itching. Bloodwork might be useful but so would a picture of the rash.

It's rarel, but not completely unheard of, for people to get drug reaction rashes associated with the treatment of their Hep C with these new drugs.

Hello,
Approaching the 3 months mark, doing BW on the 20th.
Can't wait!

In the last 3 to 4 weeks have been itching, on arms, legs, stomach.
As a result get hives like I did before tx.
has anyone experienced the same after treatment?

Hi, am living in Uruguay. I just startet 5 days ago my treatment with Sofosbuvir/Velpatasivir . I am feeling very well, but i have a sort of gastritis, during the night. Which medicament is good against this?

Hello Oregondaisy,

After 8 weeks on the medication, it's unlikely to be a reaction to them as drug allergies usually happen early on within days or two weeks.

That said it is possible that it's a reaction to the medication.

www.aaaai.org/conditions-and-treatments/...g-allergic-reactions

How we proceed depends on lots of things, but primarily this:

Is it getting better, worse, or staying the same?

If it's unrelated then, presuming what caused it was a transient exposure, it should just go away.

If it's related then it would be expected to flare up about 1-2 hours after you take a dose of medication.

It would be sensible to take some antihistamines, but of course, this will mask things.

Some allergies can be life-threatening if they cause problems with swelling of the tongue, in the throat, or with breathing.

Provided things are not too bad a pragmatic approach would be to do this:

1) Take some antihistamines at the maximum recommended dose today and tomorrow
2) Skip 1 days Hep C medication and see if things settle down
3) Depending on how far you are from medical care, how bad the hives are, perhaps park your car in a hospital car park near ER the next day, take the medications, and if nothing has happened 2 hours later go home and continue taking the medication.

The causal agent for allergies can be very hard to track down. I see hives in ER quite frequently and much of the time we don't know what caused it. It is possible it's the medication, so stopping them for 1 day (and presuming the hives settle) testing with re-exposure in a safe environment is a pragmatic way to answer the question.

The preference is to take the full 12 weeks as this will push the cure rate to 95%. After 8 weeks it should still be a 90% cure rate so it's not the end of the world if the medications have to finish.

Hello Lonnie84,

Wlodek has pointed you to the www.hep-druginteractions.org/checker which lets you check most interactions.

Maviret is Glecaprevir/Pibrentasvir

VICKS ® DayQuil ™ Cough - Cough & Congestion is Guaifenesin + Dextromethorphan

Guaifenesin is not covered but will be fine. Dextromethorphan is and it's fine to take with Maviret.

Best of luck with your treatment. Maviret is a great combination, see: fixhepc.com/blog/item/132-maviret-mavyre...me-drug-for-hcv.html

Hi, a few things going on from NZ , will put them all here as links.
A couple of short videos, I did them a while ago but were geoblocked,
butterfly against stigma
diagnosis and treatment

And we had this in the NZ Gastro Society News yesterday

hail.to/new-zealand-society-of-gastroent...BJOw/article/olat0eW