I believe there are many in the medical profession who believe they need to be 'cruel to be kind' thinking that we may 'learn our lesson' if they are cruel to us. It is shocking. Some maybe think we will not 'endanger' ourselves again if they make our experience as difficult as possible. Some think it's our own fault and we are wasting medical resources. Seems to me, many of us are over 50, this has been my experience since diagnosis, they would prefer to have us labelled junkies out of a 'life-style choice' I think. It keeps public opinion on the side of no funds for treatment. They also seem to overstate the cost of treatments in the press. Well, English Health Authority do anyway. It's handy for them to blame NICE.
Johnboy - The blood test thing is interesting ....sorry you had to experience that.
I believe HepC patients all over, are discriminated against.
My personal experience of the medical profession in England regarding this illness has been, in a word, bad.
LG

Hi Gary,i cant help much with detailed feedback about blood tests but i can tell you about my experience with harvoni.i am 57 was genotype 1a for about 38 years and got on one of the first trials 2 years ago.
I had not previously treated as i didnt want to do interferon.As it was a trial i was tested at 1 week 2 weeks 4,6 8 and 12.it was a 24 week regimen but for the last 12 weeks i was tested monthly.
The thing i wanted to highlight to you is that although i had absolutely no side effects that i could feel, at my first weeks blood test my liver enzymes were very elevated to the point of concern to the doctors.They said i may have to stop the trial but i pleaded with them not to as i was feeling fine.They let me carry on and by the time i had my 2 week test the liver enzymes had dropped back to normal and my viral load had gone from 5 million to 5 hundred.
i wanted to share this with you as i think it is common for the enzymes to be briefly elevated and you should ask your doctor to get informed about this.Good luck,David

I had a liver function test to make sure I was OK. That was at two weeks. I was having some sides that worried me. All is good now and the results showed I was responding well..... My liver showed great improvement immediately.

I will be getting viral load done at one month. Unless there is issues with your health monthly should be fine as far as I know. I am no doctor of course.

Good luck.

Ask your specialist whether sof+dac or sof+led is ok for you

Mine told me sof+led that's why i am sticking to it

You dont have to wait for the PBS if you can get your hands on generic meds.

Will see specialist next month, I think he will ask me to wait for it to be put into the PBS list

Are you seeing a gastro doctor? Did he recommend you anything?

No , I'm in Sydney

As soon as I get my meds, now trying to get them.

Are you from Taiwan?

Hi
When will u start your treatment?

Hello, I am about to begin the 12 weeks of treatment using the Sofo/Dac sourced through Mesochem. Though I have found a doctor in Tokyo, Japan willing to take blood tests he is not very supportive and insists that I pay all costs - actually 200/300% of actual costs as I am not covered for treatment by health insurance as I do not have a prescription. Nonetheless, I am grateful that he is willing to do the tests so accept the situation. He has been pushing the Interferon treatment as it is covered by health insurance but I rejected that option. He is also very, very hesitant to discuss anything related to treatment so I am in need of some advice.

First, some basic background info.

I have had my initial blood work done and have had a CT scan showing no cirrhosis/fibrosis/fatty liver. He will not refer me to a hospital for a Fibroscan and I cannot access it without a referral. I did not have the meds tested for purity, etc., as it is not possible to do so in Japan but I believe them to be safe as many people on the forum are using meds from the same company.

As of two weeks ago some of my numbers were: AST = 45, ALT = 66., HCV = 5.6 L.IU/mL. All of my other blood work shows that I am very healthy for a 53 year old.

On to the questions:

The doctor has recommended that I have blood tests done every 2 weeks during treatment. This seems excessive as the norm seems to be after 4 and 12 weeks, then perhaps after an additional 12 or 24 weeks to confirm there has been no relapse.

1. Can anyone confirm how often I should have blood tests? Is there any value in having tests every two weeks other than perhaps after the initial 2 weeks to confirm no negative reaction to the meds?
2. What tests should be done other than the following: Complete blood count (CBC), creatinine level, calculated glomerular filtration rate (GFR), and hepatic function panel are recommended after 4 weeks. Do the same tests need to be done at 12 weeks or just a HCV viral load test?
3. What are alarm bells to consider with the test results in regards to stopping treatment other than if quantitative HCV viral load has increased by greater than 10-fold (>1 log10 IU/mL) on repeat testing at week 6 (or thereafter), then discontinuation of HCV treatment is recommended?

If anyone has detailed feedback regarding the above questions I would be very grateful for any assistance.

Thanks very much. Regards, Gary

Hi
Dr freeman recommend either sof/dac or sof/led 12 weeks
I saw sames like not many people taking Harvoni here . I can't decide which one ....

I am G1a F2-F3

Going for Harvoni for 24 weeks.

What did your doc recommended?

Hi guys
I'm G1 and F1, viral load log Hcv Rna=5. Ast130 alt 350. and I saw most of the people on this forum are taking sof/dac combo . Ive prepared to buy the treatment but really can't decide which one to go.anyone on sof/led combo can share your experience?

Thanks
Elaine

hello & Welcome
I'm also only a few days old on this forum.

There are a few of us here Geno3 with exactly the same treatment history of Relapse after the old Peg/Riba tx.

It is disgraceful that due to NHS, NICE & the UK government incompetence we have no access to TX when ill, after paying lifetime of taxes & NI.
Instead we're forced to look for help to countries that are much poorer then the West, if we wish to treat now & not wait for cirrhosis.
This is very sad state of affairs & I feel seriously let down by the UK governments, NHS managers & their incompetence.

Good luck with the appointment with Doc Freeman,

For anyone looking for info about Harvoni treatment and side-effects, there is the Harvoni Support Group page on Facebook. Many, many reports from people currently undergoing treatment, mainly in the U.S. It's a private group and you have to apply to join but well worth it. Good luck, Sean : )