An historical moment! Wednesday 14th October 2009, 1550 NZDST - I have achieved SVR!  Woot, what a feeling!!  It is like time has turned back 20 years to the day when they told me I had this virus and that there was no treatment for me.  At that time they thought Geno 3 was harmless and there was no point in treating.  Also, as my LFTs were elevated but still within normal range (just) the current treatment would not work for me.  From that point on having the virus plagued me and infiltrated every aspect of my life.  In hindsight I gave it all the power, I believed what 'they' said and believed there was no cure.  In a way I stopped 'living' and started viewing myself as a sick person.

Then 5 or so years ago, my LFTs did rise above normal and I pushed for SOC treatment. Imagine my horror when I did not respond to 24 weeks of SOC at all.  Thoughts about Hep C and it's treatment had changed and supposedly I  had one of the easiest genotypes to treat and I had an 80% chance of treating successfully.  Well, it didn't happen like that and I was given a new label, non responder, and put in the 'hard to treat' category and once again told there was no treatment for me as the 'gold standard' of treatment worldwide had failed for me.

Despite the disappointment and depression I held on to my dream that I would one day vanquish the alien invader... and kept turning up at the hospital every 6 months asking if there were any new drug trials for the hard to treat folks like me.

One day my doc said, there is a trial for a new polymerase inhibitor drug called R7128 (it was a Phase 1 trial which most people run from!) and that I was a perfect candidate for it.  He also said that he guaranteed it would make the virus undetectable in my blood.  Bold words I thought and immediately screened for the trial.

Incredibly, out of 60 people screeened worldwide, I was 1 of 4 people that were able to start the trial on May 18 2008.  It was the first trial of it's kind for Geno 3 previous non-responders.  Finally, the FDA had acknowleged there was a group of people out there that had no treatment options.  Most trials and studies are focussed on Genotype 1 as it has the greatest population and is the hardest to treat.  But it was now becoming obvious that Geno 3 was in second place in the hard to treats.  The FDA had fast-tracked the testing of R7128 to try and fill a growing need.

It was a double blinded, randomised trial and I had a 1in 5 chance of getting the placebo instead of the study drug.The 80/20 percentage again!  I took the study drug or placebo for 2 weeks along with SOC and  I was UND by week 4.  Woohoo!!  I then continued on with SOC for a total 48 weeks.

There were a few bumps in the road along the way, to say the least, but I made it through and every VL test I had post tx kept showing UND until here we are at SVR!  Fantastic.

So today I feel like my life has been returned to me.  I don't regret a moment of the treatment or how hard it was because SVR is such a sweet sweet feeling. Hallelujah!!

Slept over 12 hours last night, with no sleepers.  Still having muscle twitches but perhaps a little less.  Went for a 20 minute walk this evening, did better than I thought I would.  Could feel my thigh and butt muscles working.  Was able to keep a steady pace with regular breathing.  Still have sore eyes, twitches, sensitive to light and loud noises, hot flushes, difficulty getting words out.  Going to Doc early in the week to get LFTs and CBC done.

Day 8 Post.  No sleep aides last night.  Consequently disrupted sleep from about 0330 onwards but determined to ride it out.  Just want this foggy feeling to clear.  I have started twitching frequently, all my body is affected... Also experienced the tingling and numbness others have talked about during tx and am starting to wonder if this is neuropathy?  

I guess it could also be withdrawal from the Temazepam, I did stop quite abruptly.  Went from 20mgs to 10 for 3 days and then from 10 to 0 3 days ago.  I planned it that way so that if I had any side effects they would coincide with the weekend.  Am also still on 40mgs Prozac which is twice my pre tx dose and would also like to start stepping this down...  Definitely feel unwanted drugs in my system.  Trying to drink more water as well, noticed I have really dropped it back since stopping tx.  Makes sense that I need to continue to help my body restore itself to balance.

Other than that, just a rainy Saturday in Auckland, NZ...

Not such a good day, tired, grumpy, slow speech and my brain just not quite firing properly.  Do I detect a pattern here? Good day, not so good day.  Could it be linked to the brief 10 days that I was alternating my riba from 1000 to 1200 per day?  I can't believe it is only 7 days since my last riba, seems like months ago..

Today I found out much this tx has cost me physically.  We had to go on a small bush walk today at work, there was a fair bit of up and down and I am embarrassed to say I was the 48 year old trailing behind everyone including the energetic 70-something!  Made me really aware of how little strength I have and how unfit I am now.  Hardly surprising when you consider I just spent a year virtually lying down.

I am a bit concerned as I have scheduled myself a challenging 2 weeks of location shooting 12 hours per day and after my pathetic attempt today I don't know if I'm going to be able to do it, and be the leader that everyone expects me to be...  I have 9 days to get it together, hah!!