TOPIC:

Just posted this on the one year ago thread but I'll stick it here as well
one year ago was feeling good getting on with stuff that had piled up I'd just finished my NHS harvoni couple of weeks previously and I was having a few glasses of wine again after nearly a year on the wagon
I was unquantifiable after 2 weeks and from then on undetected all the way through I was just waiting my 4 week post results
I was cured I knew I was, Now I'm not Stan Lee's lucky man and I don't have an unrealistic positive attitude but this treatment had just fallen into place and I knew it had worked so I wasn't prepared for the results when they came in
I fell off a cliff it was worse than when I was 1st diagnosed. just by chance flicking through the news channels one morning France 24 was doing a clip about buyers club Greg's trip to India so I hit website and there was a London girl I thought Wow there is is even some English people on here. so many questions in those days and still
I got in touch and she helped me through the 1st stages of contact with monk med and Dr Debasis etc so I signed up with redemption trials (thanks for all your help LG and congratulations on your SVR) so while getting baseline blood tests my local hospital I was I was persuaded to hold off on treatment .now I know the advice was well meant there are many reasons for not retreating immediately I feel there was also an element of suspicion of generics and FHC.
it was the worst decision I've ever made I wasted 12 months I'm still back to square one
I finally got resistance analysis carried out and I've got no NS5a or NS5b resistance so that's good and I picked up where I left off with monk med a year ago I received my meds last week so I've just started a 24 week run,
I'm not looking forward to it, I'm not happy about it,and I don't feel positive about it in fact I'm pretty pissed of about it in general
during last year of waiting my fibrosis has gone from F1- F2 6.8 K PA up to F2- F3 8.9 kVA
if there's anybody out there waiting for treatment, thinking about treatment, or been promised treatment, stop sitting on the fence and get on with it you may live to regret it as I do
Keith

Hi Keith,

You should go well. The success rates for 8 weeks Harvoni are simply not as good at 12, regardless of meeting the criteria.

12 weeks Harvoni from the NHS in the first place would have probably done the trick, but at that stage (probably still now) people are still trying to save dollars with this.

Best of luck with it. I'd be backing you for the win.

Keith, thank you for reprinting your article. I can only imagine your frustration. Glad you are pursuing re-treatment and hope to hear hw you are doing. Best wishes.

Well done Keith hope it all works out for you.

It seems the clinics favor waiting until the bug gets well and truly re established and the patient gets sicker before retreatment, thankfully Dr Freeman didn't take this approach after the last relapse

cheers

Hi Keith,

Thanks so much for your post and I can feel how pissed off you are about those 12 months. I also relapsed (after an initial 24 weeks of treatment) and started another 24 weeks of generic medication pretty quickly after discussing the options with Dr J. I know what you mean about falling off the cliff - I think it's partly because you get just a taste of what if feels like to get the monkey off your back, then it knocks you sideways when it crawls back on. Unfortunately for some of us the road is not as smooth but I have just cleared SVR12 so we get there is the end.

Your post will make a difference for people who may be sitting on the fence. Wishing you the best.....

Hey Keith, So sorry to hear the first treatment didn't didn't work, I guess you know I'm with Dr F on this in that 8 weeks, while working for some, doesn't always get job done. I reckon you'll have a very good chance with the Sofo/Dac, is the Riba on the NHS? and are you taking it just for the first 12 weeks or the duration or at the start and end? Excellent they're supporting you on this path where they can't fund the treatment.

My advise to you, is check bloods towards EOT too and if you have any doubts speak to Drs Freeman or Dr Debasis or both, but if you're doing 24 weeks I also agree with Dr F your chances are excellent. I ended up doing 26 odd weeks and took 3 meds for the last month (amazingly without sx) - In my case I felt I responded much better to the Sofo/Dac than the Sofo/Led Why we don't know, but Sofo/Led can occasionally have some absorption issues for the minority. Fantastic you don't have resistance , I reckon 8 weeks just caught you a bit short.

I wish you well my friend, I'm not on here so much these days as life is busy, but you have my email. it must be hard starting all over again and I remember well my fragile mental state as well as the physical, both are much improved now. It's a long journey for you, but Keep the faith & try to do nice things that take your mind off it all whenever possible. Talking to Dr Debasis is good for the positivity and he was such a fantastic support. Really, with Drs F & D you have the very best non-biased advice. I'll keep an eye out for your posts when I drop by and wish you well.

Hi Susie yes I finally got there thanks for getting me started and yes Riba is via NHS I got 12 weeks supply so at the moment that's what I'll do I don't know what the thinking is on taking Riba one nurse said take it for a couple of weeks and also heard just take it at the end so I've got 12 weeks to think about it and it's not causing any real problems at the moment
I don't know if you remember but I thought originally the hospital was on board but when I saw one of the doctors it was a no no then recently at one of their area liver meetings it was decided that it wasn't such a bad thing to support people with testing and monitoring who were self funding their own medication.
I'm not sure if the decisions lie with the heads of department of each hospital or it's an area decision anyhow they should be ashamed of not offering support considering how many hundred grand we are saving them
I want to find out more about how these decisions are structured and then maybe start a thread listing which hospitals/areas are willing to support us it may be helpful for people wanting to start treatment . Then there's doctors GPs willing to support but they may not want their names out in the public domain . Perhaps there's a way of doing it with emails privately.
Cheers best of luck
Keith

I don't know what the thinking is on taking Riba one nurse said take it for a couple of weeks and also heard just take it at the end so I've got 12 weeks to think about it

If you're going to take it take it at the start. That is when it's most valuable.

Stop if you get too much grief from it, but do take it at the start.

Keith,

Talk to Dr. Freeman and follow his advise. Even if it costs you a few dollars, Dr. Freeman will lead you to a cure. Don't get locked in to the health care system. You can afford generics: You can afford the medicine you need to obtain a cure. A cure and peace of mind are priceless. I know this first hand It's worth millions

Hi Keith,

I've been reading your posts and meaning to write and wish you luck with it all. You are in very good hands now and I'm sure you will rid yourself of this horrible disease at last.

It's interesting what you say about the response you've had from the various attitudes of the doctors regarding the generic medication, and your idea of maybe starting a thread to give more information about those hospitals who are more willing to help is a good one. I've had nothing but opposition from the hospital and my GP very reluctantly agreed to monitor me as "if anything happens to you then I didn't write the prescription" - how encouraging! So yes she is monitoring me - but I use the term loosely as basically all she's done is provide the various blood forms, and on one occasion rang me with some of my results, leaving another GP who wasn't aware of my situation to phone me with the viral load result. For my latest 9 week check I just picked up the printed forms from the surgery - no phone call at all.

I used to dread going to the liver clinic at the hospital for my yearly check and would do my utmost to see the one doctor there who didn't upset me or try to scare me into taking interferon which I made abundantly clear wasn't an option for me. What really surprised me that it was clear from my records that I'd got my ALT levels down from 150 to 49 by taking prescribed Chinese herbs, and instead of showing some interest in this I would get the usual speech about side effects (none) and potential long term health problems, even though my liver has no scarring after decades with this disease, and I'm certain that this is down to 8 years of Chinese herbs and acupuncture.

I found out about the new drugs sof/dac on my last yearly check at the hospital, but was then told as I'm 2b and treatment naive I wasn't eligible, unless of course I wanted to try the interferon first, and if that failed then I would be eligible for the new drugs. Knowing that there was an alternative to the interferon and being denied it really rocked my world. Then through a friend of a friend who was on this redemption trial I joined it myself and am now 68 days into my meds, still RNA detectable unfortunately but I'm a slow responder and am certain I will get there eventually.

The friend who put me on to this site has now completed her treatment as has got rid of the hep, she was fortunate in that her local GP surgery incorporated a liver clinic and she was dealt with in a much more positive way than in my experience. In fact I feel very let down by the NHS as I've paid privately for various treatments for years in an effort to improve my health which has taken up most of my disposable income, and as you say we are saving them grands by buying the medication ourselves.

So thank God for all those who set up and run this site, I would have been lost without the words of encouragement and the patience I've been shown in how to negotiate this site. Not forgetting the fantastic feed back to my questions and concerns from Dr. J and everyone else who has written to me.

Anyway Keith, rant over about liver clinics and GP's - I know that everyone is different and I've just been unlucky with who I've had to deal with. I wish you all the very best of everything in your journey to good health.

Hi 2b
thanks for your message. I feel I shouldn't be too hard on the NHS as they are helping me and in fairness it's all as new to them as it is to us so they don't have protocols in place to deal this
The. 1st consultant I saw was somebody's cancelled appointment and at couple of hour's notice so he didn't know what I was going to ask and was probably not prepared I expect I was the 1st one to ask but hopefully not the last
he was sympathetic but couldn't do it on the grounds of the cost of nurse services and blood tests I didn't argue the point at that time.
I then went to my GP who said it was a no-no but she did write to the hospital I think we stirred it up enough between us to get them thinking resulting in a change of attitudes.
I stalled at this point because I just didn't know how to go about testing with private labs perhaps if we ever get a thread going for friendly hospitals and GPs perhaps it could include private labs that undertake testing their charges and maybe people's comments I saw one post where they said the results took weeks to come back
I have to say that all the nurses I've seen both 1st treatment and now have been excellent, they are kind, supportive and genuinely caring
I now have all test results email to me as a hard copy of the report.
So take care and keep on ranting

Hi Keith,
Good to hear that your experience with the NHS was so much different to mine. I totally understand the constraints and concerns the NHS has regarding generic medicine, and everyone is entitled to their own opinion, however it wasn't so much what they wouldn't do for me, but the way that this was conveyed to me. One Registrar at the hospital went ballistic when I told her that I had looked into buying the meds for myself and really wiped the floor with me,she wouldn't even let me have a copy of my latest blood tests which I'm legally entitled to, but insisted that I contacted an agency, pay a fee and wait 6 weeks for it to come through, rather than press the print button on the computer whilst I was there. I was feeling so ill that day and was sobbing my heart out as she ranted on and on about why I should on no account buy the meds myself. I think she panicked then and tried to cover her back by accusing me of being rude and aggressive. This really shocked me as I had been nothing but polite, I think she must have been trying to cover her back in case I made a complaint against her. This is just one of the horrible experiences I've had the the hospital.

I realise that the NHS offers a wonderful service, they are underfunded and under terrible pressure doing their utmost under the circumstances. It only takes a national disaster like the recent terrorist attacks in London to see the dedication and selflessness of the medical profession at it's best. It just saddens me that after so many years of doing my utmost to help myself health wise (as there was nothing the doctors could offer me other than interferon which I knew I wouldn't be able to tolerate), that I am met with such opposition and grief.

Anyway the good news is that I am here now and 10 weeks into my treatment. I don't like to dwell on negative stuff and just wanted to make myself clear that I'm not having a go at the NHS as a whole, just the way I've been so deeply hurt by the attitudes towards myself when I was too poorly to stand up for myself and didn't have the strength of mind to let it go. I also feel for other people who like myself are not eligible for the treatment on the NHS and are unaware that you can take your health into your own hands.

I hope your treatment is going well and you are having a good day.

Hi coral
Am I right in thinking you got your Viekira from Egypt ,was it called Qurevo
after discussion with Dr James over the last few days he decided I'd be better off on Egyptian Viekira 12 week course at $3600 and I feel a lot better about 12 weeks than the 24 I thought it was going to be
how did you go about it, did you need an Egyptian prescription and is there anybody you can deal with that makes everything happen for example MonkMed has Tim as a central point of contact he supplies forms and explains the process etc.
I hope everything is all right you
regards Keith

Hi Kieth,

I look after any patient who needs retreatment personally.

It's quite a long discussion about the options - from wait a while through to here are all the currently available options.

Hi Keith,

All good here - just waiting for all of you relapsers to catch up!

Dr Freeman looked after my retreatment as my GP, prescribing the Viekira Pak (used with Solvadi and Ribavirin) through our Australian Pharmaceutical Benefits Scheme so a different process than my previous treatments that were through the FixhepC Buyers Club. From reading your posts are you currently on retreatment with Sof/Dac and Ribavirin or have I misunderstood?

Coral