Treatment

[tracy107]

Hi been diagnose with hep c g1a over 20 years ago I'm just going to start treatment end off November medication Ribavirin can anybody give me some advice please of what to expect please!?

[Catfishjumpin]

How long will they keep you on it? I did it and interferon in 2004-2005, a full year. Interferon is a hard drug they rarely use on us any longer. Like me you have one of the hardest geno types to kill. They have likely chosen it because your liver is strong enough to tolerate it. It did not kill my virus. I was too ill to treat until new drugs were created 2014 Solvaldi and Olysio. They killed the virus in 90 days. Ribavarin will be tough but you can do it. I did for a year. But I had two tough drugs and by the end of the year I was walking only if I had cane emotionally and mentally I had to recover, it took years. Everyone is different but Ithink its fair to say you will likely experience emotional highs and lows, flipping from no energy to manic energy. I painted every room in my house. I sat in the tub at least 3 times everyday often crying. I did recover though. I took up endurance exercise and fought my way back. I had strong years untiil 2015 when an encapsulated liver tumor began to grow rapidly. I was 50 when I found out I had hep c and not treated again until I was 61 almost 62 so its likely the virus created the cancer not the treatments. I am still a cyclist but its not easy and I do not cycle but not as often. Happy to answer any questions. Catfishjumpin

[tracy107 in reply to Catfishjumpin]

Hi first I'd like to say sorry for your sad story and i wish you all the best!!

I've been told I'll be taking ribavirin for 12 weeks as like many i suffer with depression anxiety I'm so ready to give this treatment a go if it works for me great if not at least I'll know i gave it a shot

[Catfishjumpin in reply to tracy107]

It will work. If for some reason it didn't they would treat you again but most likely with other new drugs, there are lots of new ones now. My story is my story. I do not think of it as sad. Instead I think of those in the world that really are without care. I only wish I had the energy I did before the cancer so I could cycle, swim long stretches of time in the pacific ocean, I live on it, its just outside of my back door. I am a hula hoop dancer, I wish for more energy to do that. Sad is when I was an alcoholic, its exactly like a prison. I escaped that. I gave it up to live with and fight this virus. Aloha

[tracy107 in reply to Catfishjumpin]

Hi catfishjumpin you see i got a little confused with what meds i will go on as Ian explained to me it's a new treatment of Harvoni and Ribavirin tablet form not the injection as it was!Hope that explain it a little better 😊

[Catfishjumpin in reply to tracy107]

Thats much better 👍 My shots were interferon, Ribavarin is always a pill form. Pulling for you.👏👏👏

[Sykesy01]

You don't say what drug you are being treated with!!. As Ribavirin can't and isn't used on its own as a mono therapy, what other drug are they giving you?

[tracy107 in reply to Sykesy01]

Hi yes was told yesterday that i will only be taking ribavirin for 12 i always thought it was a combination of meds 😕 but i was told that my case needs to go to head and they see if I'm worthy of treatment maybe wrong word worthy but that's how i felt was also told NHS have limited funding!!

[Sykesy01 in reply to tracy107]

Where do you live? as I have never ever heard OF ANYONE getting treated with Ribavirin on its own.Even the product literature for Ribavirin states that it should never be used alone for the treatment of Hepatitis C. I would check with your doctor about what treatment they are going to give you as I know that the NHS has limited funding, but in the same note they don't waste money on a treatment that has NO chance of working. It is usually given as a booster to Harvoni or one of the other new antiviral drugs, to people who are cirrhosed etc. Incase I was losing my mind I have just checked the prescribing guidelines for Ribavirin and can CONFIRM that it should NEVER be used as a monotherapy for Hepatitis C. I myself have received a 12 week course of Ribavirin AND Harvoni (sofosbuvir and ledipasvir), I received the maximum dose of Ribavirin (1200mg) and although it wasn't a pleasant experience I didn't find the Ribavirin unbearable. Please double check with your doctor about the treatment they are going to give you. If you want to look up the manufacturers literature for Ribavirin. Hoping that you get this sorted out. Ian

[tracy107 in reply to Sykesy01]

Hi Ian i may have got it confused as I've been told I'll only be taking the tablet treatment and not the injections maybe it's a combination of tablets😕 maybe you know more and could enlighten me on this! it was only yesterday i was given this information and there seemed so much to take in, i will ask my doctor more about this thank you so much for you feed back as it's been so much to try and get my head around I'm from Reading!

[Sykesy01]

PS : I cleared the virus after the 12 week course of Harvoni and Ribavirin, and I also was genotype 1a. I'll keep my fingers crossed for you😎😇

[tracy107 in reply to Sykesy01]

Thanks hun wow 12 this is what I'm hoping for me 😊

[Sykesy01 in reply to tracy107]

That's better Tracy !!. The old treatment used to be Ribavirin and injections of interferon, the treatment that Catfishjumpin told you that she had some years ago. The new treatment is tablets only and between 90-95% effective at clearing the virus. The drug I got was Harvoni which is a once a day tablet with Ribavirin which you take in two equal doses morning and night. I personally used my iPhones alarm to remind me to take each and every dose as it's crucial that you do, I will keep everything crossed for you and you wish you a successful treatment. Ian x

PS: although the Ribavirin can make you feel really fatigued and a bit sick it's well worth sticking out for 12 weeks to rid yourself of the virus

[tracy107 in reply to Sykesy01]

I think i just got confused i tryed to refresh my mind by looking on Google which i think i got completely wrong I'm not the brightest spark 😆 but as you explained it fits with what was said yesterday to me I'm so willing to do this treatment to rid this virus once and for all it's a remind of my past every time i go for bloods the great yellow sticker i already suffer with depression so what do i have to lose!!

Thank you for the great tip of setting a reminder to taking meds because like you said that was made so clear that you need to do the full course

I'll keep you up dated I'm just waiting for the phone call to say i can go ahead with treatment hopefully will hear within a couple of weeks.

Thank Ian i wish you all the best Tracy Oxford just down the road 😊

[Sykesy01]

PS: I'm from Oxford😂 practically neighbours☺

[tillycindy]

Hello, "Confused, from near Oxford"!!!... I finished a 12wk course of Sofosbuvir, Daciatasvir, and the Ribavirin a month ago and am now Virus undetected. (was clear after 2 wks). As others have pointed out the newer drugs are a doddle compared to the old interferon, riba treatments. Our Hospital still use interferon injections, they are suposed to phase it out totally this year ( it,s cheaper as new drugs about £ 60,000 for 12 wks course ) but luckily for me they wont give it to people with history of depression....never reckoned on depression being helpful.....as interferon makes it much worse. (they were getting suicides with people on Interferon that suffered from depression ). Only thing to watch for which they should warn you about, Ribavarin can often cause what is cheerfully known as "Riba Rage". It,s like a bad case of P.M.S or P.M.T as some call it. Just looked back on my records and from week 3 the liver nurse writes "anne very snappy and irritated ". That lasted until 3 weeks after I stopped taking the Riba. Also they made me feel a little yucky some days. But it was all worth it and I had been warned about the riba rage, so knew to clear off to my room if I felt lke murdering anyone!. While on treatment it,s important to stay hydrated at least 2 to 3 litres of water daily, I stuck lemon in mine to flavour it, and eat small and often as healthily as you can. Let us know how you are getting on. Best wishes, anne.

[tracy107 in reply to tillycindy]

Hi Ann first I'd like to say congratulating on your treatment and being clear of this horrible virus 👏😊thank you for your input I've told them at the hep c clinic that i struggle with depression and anxiety because my concern was will i feel twice as depressed and anxious but was reassured that I'll be fine! I really hope they don't stop me having treatment now I've been so committed to having it 😕 .......Tracy

Ps maybe it's good i live on my own if one of the side affects is rage 😉 Will keep you up dated soon as i know what my next step is !

[tillycindy in reply to tracy107]

Forgot to mention to you that if you haven,t already contacted them, the Hep C. Trust have a very good helpline. For details just type the name into your search engine. The helpline is staffed by people who have had the treatment themselves, sometimes nurses, and they are great at answering any questions and if in the unlikely event they don,t know the answer they will find out for you. Good for encouragement also if you did have the odd off day!. anne.

[tracy107 in reply to tillycindy]

Thank you ann I'll take a look x tracy

[Catfishjumpin in reply to tracy107]

I had that rage. I would paint when it hit me. I also drank a full gallon of water a day for an entire year. Good luck. We are right here for you.

[Sykesy01]

Thanks for your reply Tracy and I know only too well of trying to forget times in our past that you wish never happened, but remember Tracy they were all in the past. It's time to look forward and take care of yourself. I think Reading comes under Berkshire? I ain't sure but most health authorities believe in treating the virus now. Which is expensive, but not as expensive as leaving it until it causes advanced cirrhosis and the costs that can occur with everything it brings ie: numerous hospitalisations, other liver troubles, cancer etc. And eventually all the way to transplant which is extremely expensive. So here's hoping that they go ahead and give you the treatment to rid yourself of this nasty virus once and for all. All the best Ianx

[tracy107 in reply to Sykesy01]

Thank you Ian, your word's are encouraging... yes Reading do come under Berkshire! Is so surprising just how much this treatment is like you said in the long term cheaper than treating cirrhosis i feel blessed to be able to have the treatment although a bit concerned as it was mentioned if you suffer with depression you won't get treatment although i did speak about this at the clinic (i asked as i suffer with depression will the treatment make my Depression worse )i was told no I'll be fine just left me wondering but i guess I'll find all this out on my next appointment again thank you Ian for all your help and advice x 😊

[tillycindy in reply to tracy107]

Hi Tracy, it was the old treatment of interferon that Doctors worry about giving people with depression. You,ll be o.k with the newer drugs....just possibly snappy and very sarcastic!. I swore I wasn,t, but after not seeing friends for a few weeks I was told why I had become "Persona non grata". Thankfully I have been forgiven!. x x x

[tracy107 in reply to tillycindy]

That's great to hear thanks for info my mind is relaxed again xx 😊