What treatments have you been prescribed?

[CalvinHU]

How well do you understand the treatments available to treat Hep C?

Please share your experience below and interact with others in the comments!

[Chefkarl]

Stress,depression, anxiety! All there since finding out. Of course after so much research I'm aware of the treatment just a shame the nhs wont help more sick people unless they are more sick. Instead your suppose to live with it and what comes with it until your actually more sick before you get treated. Simply crazy.

[CalvinHU in reply to Chefkarl]

Thanks for your response! What types of resources did you use to initially research treatment options?

[Chefkarl in reply to CalvinHU]

Just online really. My doctors have not been great here in the UK and there isn't much support networks here for people with it either. Seems to be something that's ignored to be honest despite the seriousness of it!

[CalvinHU in reply to Chefkarl]

I hope you find some support in this community!

[Chefkarl in reply to CalvinHU]

Certainly have. Don't feel so alone!

[Sillysausage234 in reply to Chefkarl]

You're not alone 👍🏻

[Chefkarl in reply to Sillysausage234]

I'm of to india to buy my meds!

[Sillysausage234 in reply to Chefkarl]

How long have you been waiting here Karl and what are they telling you?.alan

[Dandelion_1 in reply to Chefkarl]

I hope the rules change so you can get the treatment you need. I wasn't sick enough for treatment with the new drugs on the NHS and was lucky to get on a clinical trial. Ask your consultant if there is a trial coming up that you might be eligible for.

[Dandelion_1]

Following the diagnosis in 2010, I did a lot of research on the virus, liver disease and the treatment available for G3. At the time, the"Gold Standard" treatment was Interferon with Ribavarin for six months. Over the next five years I was feeling so unwell that I felt I didn't have the strength to deal with the serious side effects of those drugs. I continued to attend the six-monthly appointments with the consultant and hoped that I would be considered for a clinical trial. I was selected for a trail in 2013, went through the screening but at the last hurdle was rejected due to a slightly low bone density. In 2015, news came of the new drugs and I followed the developments, hoping that I would be selected for a trial or eligible for NHS treatment. Sadly, I did not fit any of the criteria for trials for the new drugs and, unless my liver became cirrhotic, I would never be able to get the new drugs on the NHS. I began to push my consultant to be included on a trial and in 2016 I started a 14 month trail with 12 weeks of a combination of new drugs. I cleared the virus within two weeks and sustained the response for the entire 14 month monitoring. So, it's been a long journey but at last it's over.

[Sillysausage234 in reply to Dandelion_1]

Hello can I ask how are you feeling now as I'm in the middle of treatment now .

[Dandelion_1 in reply to Sillysausage234]

I hope it's going OK for you. Take it easy, eat well and drink load of water. I'm feeling well. I felt different after the trial drugs were out of my system, I felt free of that awful fatigue. I cut myself recently and had the usual mini-panic about not spreading the blood, etc. And then I realised, ha ... I can wash it and just put a plaster on without paranoia - like most people do! I'm due a follow up with the normal Liver Clinic in November and hoping that things are all OK. My mind still can't believe I don't have Hep C anymore but all the tests over that 14 months have proved it.

[Sillysausage234 in reply to Dandelion_1]

Thanks for the kind words,yes it's good to be getting it out of me at last i had virtually given-up on the idea of treatment I did get offered interferon and ribivarin but like many couldn't face it ,doctors said new treatments were coming but when I looked at the cost I thought yeah I won't get them but I got that phone call ,like belintte has said in posts I think the drugs go around the country in 6month cycles,thanks for the water advice will drink more today have a good day .alan

[sharialtizer in reply to Dandelion_1]

Happy for you. I also did the Pegalated Interferon and Ribaviren for 26 weeks. Hair fell out and unable to work. Still not cured but viral load had been lower.

[Londongal]

Harvoni, one year blood check in Nov. to see if I am still virus free.

Heard about treatments from my health team.

K

[Sillysausage234 in reply to Londongal]

How long did you wait?

[Londongal in reply to Sillysausage234]

Any treatment, over 15 years, Harvoni, approximately 2 years .

[Tess74]

I got my information about treatments from the hec c trust people, when I was first diagnosed i was told I could go on the older treatment, I forget what its called but it was a longer course with harsh side effects and not a high success rate for geno type 1a. The trust folk advised me to wait for the new treatments that were waiting to be approved by NICE so on their advise I refused the initial offer of treatment, I was then offered harvoni a year later but at the last minuet it changed to viekirax + Exviera + riba for 6 months. I am now 12 months post treatment and as far as I now clear of hep c (hospital app tomorrow for blood results and a fibro scan so I'll no for sure soon)

[Dandelion_1 in reply to Tess74]

Well done and I hope the news continues to be good!

[Tess74 in reply to Dandelion_1]

thanks...I'm officially discharged from the hep c clinic as from today as the treatment worked, but I've referred to liver specialist after a todays fibroscans...and so it goes on *sigh*

[Sillysausage234 in reply to Tess74]

What was the fibro saying?if you don't mind me being a nosey poke x

[Tess74 in reply to Sillysausage234]

Hi Alan, I had 4 scans in total yesterday, 3 of them read good (around 6kpa) but one was 12.9kpa on one area of my liver which has gone up since treatment (I scored 11.9kpa before treatment, then went down to 9.9kpa after treatment but its gone up 12 months post treatment) so they signed me off the hep c clinic as I'm 12 months clear of the virus and referred me to the liver specialist as they think theres some permanent damage....oh the joys

[Sillysausage234 in reply to Tess74]

Hi tess sounds like you've become an expert in k p a good to see your virus has gone ,I'm on epclusa got 5 weeks to go out of 12 ,had h c v 25+ years I was being considered for 2 transplant lungs then they said no as had hep c ,so gastro nurse said youve jumped up the waiting list, possibly 3 months then the next day phoned and said do you want to come in next week we have a cancellation so I was in,lucky really hopefully the chest team will reconsider me for new lungs ,there was talk about fibro scan along the way somewhere so will have to wait and see.nice to meet you tess x alan

[Tess74 in reply to Sillysausage234]

it sounds like you've had a really hard time! Good luck with the treatment, I hope its successful and then you can get everything else sorted without this awful virus holding things up! Good luck

[Sillysausage234 in reply to Tess74]

Thanks tess hope the bit of scarring you have doesn't cause you too much grief going forward..alan

[Sillysausage234 in reply to Tess74]

Good luck with results tess x.alan

[Hidden in reply to Tess74]

I am starting this very same treatment right now so have read your post and feel better for knowing it has worked for someone else

[Tess74 in reply to Hidden]

Good luck with it and feel free to message me if you have any questions x

[Sillysausage234]

Hi all I was offered interferon a couple of years ago but at the time was unable to take all the side effects like more joint pain and depression,so said thanks but no thanks,I've been on epclusa now for about7 weeks,it's a 12 week course can honestly say I'm glad I waited as i haven't had any problems with it I'm written off with chronic pain syndrome anyway and expected more pain.ive been hep c + probably at least 25 years it's a nasty virus takes your life and soul away,but the treatment is available keep hounding your g p take care ..alan

[SimonHM]

Being diagnosed with HCV at the same time I was diagnosed HIV (July 2015), meant I was being treated in a specialist HIV clinic (Ian Charleston Day Centre at the Royal Free Hospital), I was extremely lucky to have one of the countries leading consultants who deal's with coinfection. Who explained about Hepatitis C and the possible treatments that were available. He also explained about the 3 new treatments that were waiting to be signed off by NHS England and N.I.C.E. Which were:

1. Sofosbuvir / Ledipasvir (Harvoni).

2. Paritaprevir/Ritonavir/Ombitasvir/Dasabuvir (Abbvie 3D).

3. Sofosbuvir plus Daclatasvir.

I also went online to do my own research. I even attended a one-day conference at the Royal Society of Medicine on 4th July 2016. Uniting Voices for HCV Elimination. Organised by The Hepatitis C Trust & ReShape.

Although I was lucky not to have any scarring on my liver, I got signed off by the commissioning panel due to psychological grounds. At the beginning of May 2016, i started an eight-week course of treatment with Havroni.

[Sillysausage234 in reply to SimonHM]

Hi Simon hope your in a good place today,how did you find the harvoni treatment ?Are you getting treatment for the hiv?.alan

[Dandelion_1 in reply to SimonHM]

Hi Simon. I went to the Hep C trust's Speak Up conference at the Apocetharies Hall in London in July this year. It was brilliant and you can read about it on their website. Yes, we need to speak up to ensure that everyone gets tested so the treatment costs come down and the new drugs can be offered to more and more people.

[Sillysausage234 in reply to Dandelion_1]

There's a good article about that d hepmag .com

[SimonHM]

Yes, i had Havroni last summer. and have been on effective antiviral therapy for my HIV since August 2015 and have been an undetectable viral load for HIV since September 2015.

[Sillysausage234 in reply to SimonHM]

Good on you ,for going to all them hospital appointments.good luck..alan

[SimonHM]

Thanks. the last 2.5 years have been extremely challenging, 2 Cancer scares, 3 life-changing chronic illnesses ( Including HIV & HCV), Depression with suicidal ideations, redundancy, homelessness for 18 months, divorce and bankruptcy. But each day is slowly getting better.

[Sillysausage234]

Things can only get better...comes to mind,you must be bulletproof by now.

[SimonHM in reply to Sillysausage234]

Not quite but I am a hell of a lot more resilient

[cyclegal]

I had 6 months of interferon and ribavirin. It wasn't very nice. Hair dropping out and extreme fatigue. I've never known tiredness like it. I didn't think I could cope with anymore if it hadn't worked but thankfully I was clear and remain clear 10 years later.

[Sillysausage234 in reply to cyclegal]

Hi,can I ask what genotype you was?And have you any scarring?

[cyclegal]

To be honest i can't remember what genotype i was. By scarring do you mean as in Cirrhosis? I have that.

[Sillysausage234]

Do you still have clinic appointments?after 10 years?.well done by the way for sticking it out as I don't think many did.

[cyclegal in reply to Sillysausage234]

Yes I still have to attend the clinic but only once a year now. Also have the scans once a year too. It did use to be every six months but as I'm doing well they dropped it to a year but I can ring them up and get in touch if anything's bothering me.

[yooper5]

I didn't know I had Hep C since '74 due to blood transfusions, 20 units. I was diagnosed at the same time as with lymphoma. Treated with Harvoni after chemo. Two years ago.