Hi LG, the way I read the announcement is:

So even if the Trust didn’t support someone or that person didn’t feel they could work with the trust it wouldn’t exclude them from the possibility of being involved. However, it would take a lot more personal advocacy and networking to achieve.

Hi Ken,

I also noticed a huge improvement during the first few weeks that has dropped away to some extent now but I wonder how much of that was due to the massive and sudden reduction of the virus causing a significant contrast for our bodies and minds? A bit like turning on a bedside lamp which is blinding at first but after a few minutes you realise still isn’t quite bright enough to read comfortably by.

I’m also reminded of a comment I saw on another site which can be paraphrased as:

Many of us being treated are in our 50’s and 60’s with all the issues that go along with growing old. The majority of us have been infected for decades and have had symptoms that hide the effects of ageing. Those little niggles are minor compared to the systemic issues that HCV causes. After treatment the HCV symptoms dissipate making the normal aches and pains of aging more evident. We get to start feeling for the first time in decades. We start living again and will now notice things that have always been there, but were minor compared to the Hepatitis.

Now personally, I’m affronted by that suggestion as I’m still a good couple of months from turning sixty and have no intention of getting old!

…..but I do plan on doing a lot of living from now on.

Hi Valerie and welcome.

As Mike says, further information would assist us. As well as your country, have you had previous tests to determine your HCV genotype and also the current level of fibrosis, if any, in your liver (usually expressed as F0-F4 but may be in kPa).

Maybe the doctor was thinking of which liver specialist he could hand you over to? Anyway it sounds like you will need to be proactive in seeking treatment and there are people here who can make some suggestions regarding that from their own experiences of successfully seeking treatment from unresponsive public health systems.

Hi dt,

I’m sorry to hear of your experience with your friend while you are feeling vulnerable. There is no blame to you in what happened and you did the right thing by telling them about your treatment using generics. Your friend’s initial response was unfortunate and not a nice place for you to be during the emotional ups and downs that we experience during treatment. But if they have been a long term and trusted friend then I suspect that on reflection they may well be regretting their response which could have been driven to some extent by their recent rejection for treatment and the thought that someone with who they shared a commonality appeared to have made the jump onto a moving train that they were too frightened to make?

One thing all of us here need to keep in mind when discussing generic Tx with others is that we are ‘early adopters’. We are the 10-20% of the population who make an independent assessment of our needs versus the risks/benefits with only minor weighting to what the rest of the herd thinks, then we follow our own path. Most people aren’t like that and I think all we can do is lead them to the water and show by example that it is safe to drink. As they see more doing so their own confidence will increase.

Imagination and these chems do strange things to our emotions while on treatment. At 12 weeks or half way into my Tx I’m not sure if this has lessened or whether I am just learning to compensate better but I have found that it is often best not to respond to strong emotional reactions but rather to consider them a side effect of the Tx and put them to one side until I can process them better, be that overnight or on a couple of occasions several days. Friendships and relationships are too important to burn on the spur of the moment and anyway it would be boring if everyone thought the same. But at least we have this site where we can come and have a good rant and get it out of our system with friends who understand.

Or in what will probably be mankind’s epitaph: “…..if only we’d known!!!” and that applies to far too many examples already discovered and no doubt many things we will discover in the future.

Hindsight is a wonderful thing but up until 1989 we hadn’t dicovered HCV and for a lot of us here that was too late. But the problem is that the social stigma around IVDU has meant that regardless of how we got the virus we haven’t felt comfortable with telling anyone. As a result there hasn’t been an open and honest discussion about HCV in our society because the vast majority have not felt comfortable revealing their status. The result has been there is appalling ignorance in the general public and up till very recently very little pressure to solve an epidemic effecting probably one in forty people across the globe.

And that is both sad and has probably resulted in greater spread of this virus.

edit: my comments are not a criticism of Lynne’s quote but a reflection on the changing sterilisation practices over time. The discovery of HCV and HIV resulting in a tightening of procedures when we became aware that what was previously accepted as good practice was not adequate for these viruses.

Thanks Jimmy, your experiences very much reflect mine pre HCV diagnosis and continuing up until current Tx. Same symptoms and GP/GI suspicions but always sailed through tests. As with you most symptoms have now gone and your mention made me realise I have recently been consciously drinking water to keep up hydration levels rather than being driven by thirst. Interesting that I also never had a sweet tooth and choose savoury items by preference.

While realising that all foods are converted to sugars for our bodies, I wonder if our not ‘preloading’ our diets may have helped us avoid tipping over into diabetes? Or were we just experiencing some more poorly recognised extra-hepatic symptoms of this virus?

The above one is a honest forum. The other one is worth a check from time to time…..not sure how long they’ll let me remain a member though.

Riba does cause skin issues, itchy, dry, rashes and lumps, etc. and insect bites also seem to be worse on it too. If it is just a few lumps and not causing problems I would monitor for now and see how they go but if you are concerned or a serious rash develops or spreads then seek medical advice. Unscented/coloured, pH balanced moisturisers (I use plain sorbolene) seem to help a bit.

BTW my ears are dry and flaky this week.