One thing you need to get straightened out is how your current tx for HIV will interact with other meds. There may be a reason why the doctor does not want you on a protease inhibitor. My understanding is that some HIV meds are protease inhibitors. I don't understand the complexities of treating the co-infected, but one of the websites I sent you in the PM was an HIV/HCV site and MedHelp also has an HIV forum
I don't live in the UK anymore. I live in the US. I've had the virus for about 30+ years. If your liver biopsy is good, maybe you can wait a while. In the US they are having a lot of clinical trials with all oral drugs (no interferon), but it's still in the trial stage. I have never treated before and I'm trying to wait to do an all oral trial. Have you checked out the clinical trials in England yet? Did you say the triple treatment isn't out yet in England? With the triple treatment they have now, there are more side effects, but the length of treatment is hopefully less....24 weeks instead of 48. Have you asked about getting the IL28B test done? This will tell you whether you will respond well to interferon or not. If you are a CC that would be the best. You could be a CC, a CT or a TT. What was the results of your liver biopsy? Ask them for specifics and tell them you want to be tested for the IL28B. You need all this information before you make a decision on treatment.
Hallo,and thank you 4 sharing with me your experience.So,do you living in UK?and do you doing the triple?I can't believe it!I was almost rasaigned to do what they can(the only 2 drugs terapy)my genotype is 1 and as far as i know are the worst.The liver biopsy I did here in Hull and the doct.say was not too bad ,and for this reason his say to start now that I'm not too ill. I was diagnosed in Italy on the 1990(22 years ago !!).I really need to know if you living in the UK and,if possible,where about.I know that there are more chance to clear the virus,How anbout the side effect??I mean if with 2 drugs you have side effect ,with the triple you have more than that?please light me on.I waiting to hear from you.
Oh...And yes, I'd get the IL28B test done for sure. There's no way I'd do only INF and Riba right now. If you have to go on these awful drugs, you want a better chance of clearing the virus! Do you know that with the triple treatment it's ususally only 24 weeks on treatment now? Do you know your geno type? When were you diagnosed? Have you had a liver biopsy?
I know they have a trial site in Wales, but I'm sure there are other trial sites in England. If you don't get any luck with your GP's office, I would just google trials for Hep C in England. I've been on one of those sites and they have phone numbers, or contact information. They'd be able to point you in the right direction for other clinical trials. They're so slow in the regular old doctor's offices in England...Or maybe I'm not being fair because I haven't lived over there for a long time now. I just hear what my family say about health care and sometimes I get so frustrated that they wait so long for answers. I read a little bit in your other post about telling a friend and I'd say for right now, hold off. You need to find out what treatment is available and concentrate on that. Maybe find a support group with people that are understanding what you're going through. GOOD LUCK!
hi,I was thinking that I'm just the only that I will the best for this treatment.thank you for you answer! the fact is ,I reading a lot about side effects and way should I risk for something that are so dangerous and don't serch the best?if you read all my prevoius post,at the beginning I didn't knew nothing abaut this kind of treatment.All what I know I've learned here.way the doct.don't talk abaut the triple?they know are it already in use in USA,way they haven't tell me abaut the IL28?i know that the result of IL28 test ,can show that, the only 2 drugs therapy could determines the result .I don't thing they done to me this kind of test,or, I don't know!!later I'll try to phone at the nurse and try to understand. Where can I find the trial clinic?in the web?or asking at doctor?again a big thanks ....ziffy1
Hi, I live in the US, but from UK originally. Have you checked out the clinical trials in UK? The trials over here are free and I'm sure it's the same in UK. There are some great drugs in trials and that way, you may be able to get on a triple therapy without having to wait. If you're going to treat, I wouldn't treat without the triple therapy....You want to give yourself the highest percentage of clearing that you can!
Just waiting for NICE to approve it, I was at the appraisals early on in the year with NICE and there was a criteria the Pharma company's had to finalise, they will be on the shelves next year but some Consultants got some free meds to use on some patients ..
I am clear and lucky enough not to have side effects on treatment..
The trouble with waiting is the cost of the meds here in the Uk, some PCTs can not afford them so even tho the new meds are on the shelves you may still be offered the meds your about to start...
Hi PX,yes I'll go in the website and see,So',you say that the triple therapy in the uk are approved but they start to be diffuse the nex years?It is in experiment on some people?Have i understand well?so not chance to be in triple therapy,yet?The nurse told me that I'm going to start interferon and ribavirin in 2 week if my anemy(low iron)is better,so I'm waiting blood result.Are you clear,now?was hard this therapy?and it let you well or the side effect still present?I 'm concern abaut don't doing triple iherapy because I know there are70%-80% of chance more to clear the virus.I don't want do this therapy with less chance only because the triple are not yet in use.maybe I could wait!!!I'm HCV+ since 1990 and my biopsy was not as bad(the doct.say).Please let me know more and thank you very very much for you advices
Hi Ziffy I am from the Uk, tho not on treatment.I cleared 5 years ago..
Are you saying your starting the Triple therapy, or just Interferon and Ribavirin ?. There are many in the Uk on the triple therapy both on trials and some have just been approved by Consultants to start if they meet the criteria before the meds are approved next year...
There is a UK based forum if you want to talk to others in the UK, please google the HepC Nomads and that will take you to us.....Px