Are you aware of any new treatments being researched?

[CalvinHU]

How do you feel about participating in clinical trials?

Share your experiences and interact in the comments below!

[Londongal]

Hi all,

When I was first diagnosed I was asked to participate in a trial to see if interferons & ribavirin would work for someone with mild Hep C. I however got selected for monitoring only, no meds. No further trials since.

I’m not aware of any new trials and I wouldn’t do any now anyway because I have been treated with Harvoni.

Best K

[Dandelion_1 in reply to Londongal]

You can demand the interferon and ribavarin treatment from your consultant at any time once you are diagnosed with Hep C. It's the standard treatment if the new drugs are not available to you yet. If you mean that your liver damage is mild, this shouldn't be a factor with the standard treatment. There are trials for the new drugs available. Let your consultant know that you would like to know what's available for you. You can research what's in your area for yourself, this is a useful site clinicaltrials.gov/

[Londongal in reply to Dandelion_1]

Hi Dandelion

I’m sorry, I should have made it clearer that this was about 20 years ago when I was first diagnosed, just sharing my experience, but yes it reads as if I’m talking about the present.They only use to give it to people with Hep C further along the line than me. I have since been treated with Harvoni.

Many thanks.

All the best to you.

K

[Dandelion_1 in reply to Londongal]

Oh good, great news and I hope you're well.

[Londongal in reply to Dandelion_1]

I’m ok thanks. I hope you are still doing well.

K

[SimonHM]

I mentioned in an earlier post a few days ago that there were 3 new treatments that were coming last summer. I did the trial on 8 weeks on Havroni.

[Chefkarl]

Unfortunately my job as a fulltime chef and the way my job moves me around won't let me do them. However I looked into the idea and struggled to find resources offering them. Both gps o have had have never mentioned them. Why isn't this something being offered on the nhs if treatment is so high and waiting list so long. The UK really need to sort the whole hcv thing out and do more. It's not just the disease we suffer from.

[Dandelion_1 in reply to Chefkarl]

Ask your GP for a referral to a specialist dealing with Hep C if you haven't already got one. GPs won't know about the trials and couldn't refer you to the trials anyway, that has to go through a consultant usually. You can find out what trials are available through this site clinicaltrials.gov/.

[Dandelion_1]

I mentioned some of my experience of clinical trials in a previous post. I'm not up to date with anything that is being developed this year but this is a very useful site to find out what's going on (or gone on in the past) and where. clinicaltrials.gov/.

Of course, we dream of getting on a trial that has a good chance of curing of us of the virus. Long waits with no news then, bam, you can be offered a trial, usually quite short notice. Then reality hits and it becomes a bit scary. Or a lot scary. These are not drugs that have been passed, you are taking a risk in signing up for a trial and the paperwork you are required to sign lets you know all this and more, in less dramatic words. So it's all about doing your research, asking the clinical trial team as many questions as you can, thinking about your prognosis, your chances of NHS treatment, how you feel about the risk of success or failure, side effects, your life circumstances, your commitment to the whole trial, etc.

It worked for me but it doesn't always work for everybody on a trial.

[Sillysausage234]

There's a good article on hepmag.com new treatment pipeline for hep c .....

[Tess74]

I felt nervous enough about taking a treatment that was new out (I think I was the first in my hospital to go on the abbvie stuff) ..I like to look into how the treatment has worked for others etc beforehand so I dont think trails were for me, I'd be too nervous and probably imagine a shed load of side effects lol. But I was lucky and got 'cured' 1st time so I didnt really have to give it a lot of consideration. I think those who have done the trails are really really brave and I'm very grateful to them

[cyclegal]

I'm not too aware of new treatments because i've cleared with the interferon/ribavarin but i do take part in the research and have done for several years. I spend an hour or so at the hospital. I get fibroscanned each time and they used to inject dye into my bloodstream and monitor how long it took my liver to clear it. I also do mental alertness type tests under timing to check for any slowing down of my faculties!!

[Phillipaussie]

I'm up for any clinical trials on offer, sounds like a win win situation to me. Feel free to get in touch.

[Cara78]

Yeh.i am a guinea pig but I want rid of this hep c and just hope that any long-term effects outweigh what the virus would do anyway