Hi all, I'm someone who has been interacting with ghe Liver trust for some time. I'm just about to start my 3rd round of interferon, ribravarin based meds covering 2 years of my life. First time I was non detectable at 48weeks but it didn't stick on my 3 month check. Next up I did rib' and int' in conjunction with telaprivir which was absolutely horrible. After 6 months I was non detectable again and this time it stuck, YAY!!! After about two years of being virus free I succeeded in reinfection but got a different genotype yo mix things up a bit. I felt like such a grade A twat and was so embarrassed to be in contact with the same lovely, kind, patient good people who had been my hep nurses for the previous 6 or 7 years. No matter how much they must have thought what an idiot they have only been supportive and on my side. So now I start my next round, only 3 months this time and apparently it's getting better and I don't have to suffer protease inhibitors thankfully. When I was first treated I was in a medical study and success rates were less than 50%. Now I'm told it's upward of 80% and I think I've done the nasty regimen so others font have to now.
I start on the 4th of the 4th at 4pm which seems spritual, or numerically significant if you believe in that stuff, I don't, but I'm so positive this time and I know I won't be having a fourth round if this is successful, fingers crossed.
Has anyone else with genotype 3, alt in the 30's, some cirrhosis gone through treatment recently and what's it like now?
Written by
ianmacdonagh
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I am sorry to hear that you have been unsuccessful in treating so far but you seem pretty strong in terms of sticking to the treatment well done you!. My I ask how you got reinfected? Are you in the uk? i have hep c but i don't know my genotype yet will do in two days time, have you been offered any other treatment types as i am aware there is new ones up and coming.
I saw your post and tried to reply the other day Simon but it got lost in the ether. I was originally infected due to a girlfriend and then through a best friend. You'll understand there are areas of society which have an almost 90% infection rate.
Your story got to me as it reminds me so much of my own, the fear of the unknown and the lack of groups to chat to. This forum is a great way to overcome that. My advice to you would be to grasp opportunities of treatment when they arise. The virus itself is asymptomatic until you get towards the end when it is horrible but this takes 20-30 years in some cases. My reasons for getting onto the treatments was the death of a very close friend at 41 who had a really sad end. He never sought treatment and I know he'd be here now if he had.
The treatments themselves are so much better now, I was so sick on the medicine originally. It's not easy but if I can do it I know most people can. Getting to know your nurses and your treatment is the first step but there's nothing really scary. Your genotype doesn't really matter too much 1 is as good as 3 etc.
Think positive thoughts Simon and I promise it's not as scary as you think it is at the moment and it gets easier. Good luck mate, fingers crossed.
Hi Ian thank you for trying to comfort me. How long have you had the virus? Have you tried different treatments? I have already told my nurse I can't have interferon due to my depression.
I've had it about 15 years or so. All my treatments have involved interferon but it does effect your mood definitely. Better regimens come up all the time.
Is there no other way of treating hep c without interferon to your knowledge? I've had heard of a treatment called solvadi if I spelt that right..I no a few people on here have had havarni treatment and are in the uk
I have heard a lot about harvoni & Ribavirin most are success stories also it is dam expensive if you don't have insurance. How long have you had the virus Estiebargle?
I live in NZ and Gilead drugs are not subsidised. However I can source them through Australia cheaply but need s supportive GP mine us good but super busy.
So just hoping for some good news on my next specialist appointments.
I got infected in 1996/7 so time is running out.. It's like I'm trying to outrun decompensation and cancer ...
I know they are treating people with Harvoni and ribavarin for geno 1.I had this treatment last year and I'm still undetectable. Fingers crossed. As for geno 3
I know it's more difficult to treat but the drug companies are bringing more to the market now.
I hope all of you who are waiting for treatment can get it ASAP. It really has made a huge difference in my life.
Just so grateful because my Cirrhosis symptoms took a long time to dissapate even though I changed my diet for the good and remained abstinent from alcohol and drugs. It wasn't until I had the treatment that all my symptoms cleared.
I would still be stuck in a bad place. Today I'm lucky and fortunate to have some quality of life back.
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How many more scans???
Finally a diagnosis
Decompensated liver
Very unexpected news.
