Just been diagnosed hcv (2) - Hepatitis C Support

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Just been diagnosed hcv (2)

Iamscared profile image
24 Replies

Hi all, I've been diagnosed with hep c. My specialist has offered me treatment but warned of harsh side effects. Can anybody with experience please tell me how bad these side effects actually are. Can I still work? My job is quite physical & I can't afford to lose it. The newer meds without the side effects are not available to me because of cost. Scared not to but scared I won't cope well with the side effects. Would love to hear from anyone on this treatment or who has completed it. Thanks for reading.

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Iamscared profile image
Iamscared
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24 Replies
fenderjazz profile image
fenderjazz

Hi there, what have they offered you? I was on Interferon and Ribavirin for a month but didn't respond to that treatment....didnt like it, flu like symptoms , went on to Harvoni and Ribavirin about 18 months later much better treatment easy to deal with on a day to day basis and successful, been HCV free for 12 months. I turned down 2nd Interferon treatment and waited for Harvoni to be available. Depends how sick you are with hep c and how much damage it has done to your liver. It's not a nice place to be, I know ! I'd give it a try and see how you do on it. A friend of mine did ok on it, and has been HCV free for 10 years . Good luck we're here to help . There's some great people on here to offer advice

Iamscared profile image
Iamscared in reply to fenderjazz

Thanks for that. They've offered interferon & ribavirin. 2 tablets a day orally & 1 injection per week. I don't know how long I've had hcv or how I contracted it. My fibroscan came back 5.6 so my liver isn't bad yet but its a matter of time. I don't have symptoms either. Just a very night liver enzyme result during a routine blood test. I'm shocked & scared but I'll try the treatment & hopefully cope with it.

Thank u

fenderjazz profile image
fenderjazz in reply to Iamscared

Yeah give it a try, everyone responds differently to all treatments. And you feel fit and healthy, I think you stand a good chance of completing the course. Good luck , let us know how you get on.

Iamscared profile image
Iamscared in reply to fenderjazz

Thank u & I will stay in touch

neron007 profile image
neron007 in reply to fenderjazz

side effects almost none existing,,,,,,,,,,i did it for 6 mo....still working and now negative for 14mo... good luck . don't be afraid ull be ok

Iamscared profile image
Iamscared in reply to neron007

Thanks neron007. I hope I'm the same 6months down the track. Great to hear..I'm happy for u.

Its been great to hear from all here

Lshorty profile image
Lshorty in reply to neron007

Congratulations!!!!!!!! I WILL NOT BE AFRAID!!!!!!!!

jennyjolly profile image
jennyjolly

Which meds will you be on?

Interferon/ribavarin based meds I've read do seem to have more sides but depends on the person

Some sail through regardless

Maybe to do a hard physical job is pushing it

You may have to see how you feel at the time

I'm self-treating as not the right time for me to be on meds.

You join Hep C friends on Facebook

They would answer all your questions and be very supportive.

Best wishes for your treatment/recovery.

Iamscared profile image
Iamscared in reply to jennyjolly

Thank u. Interferon & ribavarin..but will see the doc to start my treatment on Fri 3rd march. Will report back on exactly what I'll be on. I'm going to try & get thru it.

Iamscared profile image
Iamscared in reply to jennyjolly

Just wondering what u mean by self treating? Not the right time for u for meds...is that due to possible side effects?

jennyjolly profile image
jennyjolly

Keep well hydrated as that helps

Wish you an easy ride and full recovery.

Iamscared profile image
Iamscared in reply to jennyjolly

Thanks & I wish u well

Lodger56 profile image
Lodger56

Hi dontbescared 😉 Can you say what type you have? Either way what jenny and fender have said is spot on. I had type 1 and never responded to combination therapy but did respond to tri therapy. Did work as a roofer first time round but with tri was impossible. 1 last thing! Your health and wellbeing are far more important than ANY job

Iamscared profile image
Iamscared

Hi thanks.

I have type 2. Will start on pills twice daily & injections once a week for a total of 24 weeks. Doc said side effects can be very bad but a small percentage experienced no side effects at all. I just hope mine aren't too bad & I can get on with my days. Really don't want to fail at work. I know my health & well being are the most important thing but I'm scared I'll spiral back into depression if I quit my job & felt like crap. I will try my best to get thru it. I have to

Hepcwtf profile image
Hepcwtf

I have type 2a and started sovaldi and ribavirin 12 week course two weeks ago. 2week check tomorrow so very excited to see how I am getting on. I read the leaflets on the drug and couldn't work out what side effects I wouldn't get. Decided to just get on with it and listen to my body. I am only two weeks in but Zero side effects so try not to worry.

Iamscared profile image
Iamscared in reply to Hepcwtf

Wow thanks guys. That is encouraging. Hepcwtf,, keep us posted please as will I.

Lshorty profile image
Lshorty

I have type 1b. Starting harvoni 12 week treatment, HOPE IT WORKS!!!!!!!!! GOD BLESS US ALL!!!!!!!!!

Yankeefan profile image
Yankeefan

I would like to know what is the treatment they offered because harvoni which is the new miracle medication has almost No side effects, yes, no side effects. You may feel tired but compared to what I went through from the hepatitis C I was grateful to be tired. So if you can please let me know what medication you are going on so I can answer more clearly why the doctor feels you may get sick.

Lshorty profile image
Lshorty in reply to Yankeefan

I have hyponatremia, RA, COPD, ulcers, and nodules in my lungs. One in each lung. Mostly concerned with limited fluid intake and Copd! Thanks for the reply! You are a wonderful and caring person!!!! God Bless! One more thing, is genotype 1b harder to cure? Thank You!!!! :)

Swalters81 profile image
Swalters81

My partner has genotype 3 he just started his meds today. Epclusa its called. Does anyone know anything about it??

in reply to Swalters81

Hi, was diagnosed with type 3 on 17th Feb and advised Epclusa had become available on NHS on that same day 🙂 From what I've read side effects are generally tiredness and headaches but I think it depends on the person.. Good luck with treatment - I start treatment April/May so will be follow how your partner gets on 👍

I was diagnosed last October and contacted the Hep C trust. They advised me that should l be offered the interferon-ribaviran meds to contact them and they would liase with doctors on my behalf, saying that some health areas are trying to use up existing stock of interferon. There are other, kinder treatments available now so push for them..

l have genotype 3 and start treatment April/May with new drug regime Epclusa which clears all genotyoes and is more cost effective than others on the market.

Hep C Trust: 0207 7089 6221 or 0845 223 4424 (Monto Frid 10am - 4.30pm)

Phillipaussie profile image
Phillipaussie

You will be alright,trust me,it will all sort itself our as you progress,take one step at a time you will do well, let us know how you go, swap Ideas etc,you in the drivers seat now you will get thru this. Have faith...Un good ol you!

Coolninja807 profile image
Coolninja807

Im taking mavyret and so far so good..the only side effects are slight diarrhea and gas..other than that i personally dont feel much. Im going on 5 months of treatment so far so 👍 good!