Yep jim I'd heard about St John's Wort before, and its contraindications with sof. Not sure about milk thistle - I've been taking it for years and am pretty sure my ALT levels have been a bit lower since. According to this interactions check it seems OK with Harvoni, but since I've only got about 1 week's supply left, may be well stop them now in preparation for treatment. Which will be soon, hopefully!


www.drugs.com/drug-interactions/harvoni-...67-16903-1633-0.html


Edit: Conflicting info, again Lucinda Porter...better to be safe than sorry

Attention for Liver Disease: The Hepatitis C Antiviral Long-Term Against Cirrhosis (HALT-C) study reported that silymarin was associated with reduced symptoms, but not reduced liver inflammation when used by hepatitis C patients. Milk thistle may lower liver function tests. Because it appears to interact with cytochrome p-450 metabolized substances, do not take milk thistle during HCV treatment.

Safety Information: If used as recommended, milk thistle is generally safe. Reported side effects are mild laxative, gastric complaints, itching and lowered blood sugar levels. Safety has not been established for children, pregnant or nursing mothers.

Interactions: May interact with any cytochrome p-450 metabolized substances. Silymarin has the potential to interact with many drugs, herbs and dietary supplements. A few are hormones, methadone, antibiotics, anti-seizure, antidepressants, antipsychotics, antihistamines, organ transplant-rejection, cardiac, lipid-lowering drugs and sleeping pills.

www.lucindaporterrn.com/hepatitis-c-and-milk-thistle/

Good stuff Chester good to see people coming to the end of treatment with so few side effects well compared to the past treatments anyway. It's also good to see someone so passionate about generics although I have never mentioned it you posts here and elsewhere helped encourage me to chase down these meds.

Good Luck

I should add that I think the downside of the Riba has been kicking in over the last two weeks. Been short of breath, bit fatigued and right quadrant abdo discomfort. Which is disconcerting but as I understand you can't go backwards on treatment, I'm not letting it worry me.

Anyway, I'm going to get an FBC done tomorrow when I go in for my eot VLs and will report back the results for the benefit of others on riba. Doubt I'm anemic but like Greg, I think I might be heading that way. I had an FBC at 2 weeks when everything was comfortably normal so the comparison will be interesting. It hasn't been unpleasant being so close to the end. But if it is the riba, don't think I'd like to be doing 24 weeks of the stuff.

Really, the entire treatment has been a doddle.

Hi Chejai,

My consulatation with Dr Freeman at GP2U was $69 and it is exactly the same as going to the doctor's surgery only you do it by skype. It's particularly good for people in regional/remote areas and ofcourse it's an important link for many of us in becoming Hep C free. It was in fact my starting point (and will be my middle and end point).

Your brother's situation is more complicated and I would not begin to provide advice however an appointment with Dr Freeman or one of the drs at GP2U will provide an opportunity to discuss and be better informed about ALL of his options for treatment (not just those currently available through government agencies).

In relation to side effects I am one week in with the generic Sofosbuvir and Ledipasvir and my sides are minimal (slight headache and a bit fluey). I think I have been a little lucky so far but the sides are nothing like the horror stories associated with the old interferon treatment.

I know you are trying to think about your brother, your son and your own health but you are definately in the right place.

Coral

Thanks to Joy and you Coral for that info. I spoke to my Medical Centre yesterday, my GP has been off this week, so I don't know if she has contacted the Specialist in Brisbane yet to find out if he can send the script or if she can write it herself. I now have to wait until next week to see her. This GP2U option sounds interesting - what does it cost? It might be a way for my brother to do this. I've sent him the genotype treatment article and other sections from this website to take to his GP because he's fed up waiting to get into the Liver Clinic down there. He has cirrhosis and is not well at all but really wants to do this.
I'm relieved to have Dr Freeman say I will only require 12 weeks instead of the 24 my Specialist had thought. I've been reading the posts on Sof + Dac side effects to get an idea what I might be in for. I have to plan my son's homeschooling for next year and factor in my treatment/health issues.
This is a great site and everyone is so supportive. I was registered with another HepC forum a couple of years back and a particular person was unnecessarily unkind to me so I left.

You might be right, I think there is a lot of this going on. On that other board when I posted something criticizing Gilead, I was scolded by the moderator, who told me " A lot of us owe our lives to Gilead and we don't like to see negative comments posted about them".

When I noted on there how I was getting refused treatment by the insurance co I was advised to "pray", "wait", and apply to Gilead's now defunct patient assistance program, and it was defunct when they were advising me to apply to it.

Hopefully anyone on there who actually needs access isn't going to sit there and "pray" and finds their way here.

Thanks Cyndi, appreciated.

It's been inspiring to read of J's and your journey.
You both must be thrilled to finally be able to get him treatment.

Best wishes
GAJ

Hi Alsdad & dt,

Thanks for your comments. I should point out that it isn't completely plain sailing over here either.

I had to ask my hepatologist about generics to get a response. (I suspect it is still not the done thing for public hep clinics to be recommending generics to their patients) Once I asked, he was forthcoming and told me the clinic had other patients doing the same and that he would write me a private scrip but did ask where I planned to source them from, obviously the "do no harm" rule kicking in but he was aware of Buyers Club, Kingswood and Greg. I then asked if he would monitor and his comment was that as I was a patient of the clinic I needed to continue being monitored anyway. So it can still be a bit "nudge, nudge - wink, wink" over here.

I then told my GP, explaining that I just expected him to monitor my general health. He was more difficult with dire warnings of internet scams, etc. He did calm down a bit when I explained where I got my scrip but I suspect he won't be ready to accept until I start getting results of my bloods.

And yes dt, I'm selfish too. If I hadn't got their support my plan was to keep trying other avenues until I got the generics. But I also want to help others which is why I'm writing about change.

As you say, you both have good docs even though the NHS won't support them within the system at present. I have little doubt they will be discussing with their colleagues, particularly once they start to get "undetectables" and then SVRs down the track. And I should imagine that 2/3 of the hepatologists in the ranks are looking on with interest or talking round the water cooler at the moment anyway. Only a small percentage seize change on first sight but many will jump on board quickly when they see benefits with most of the rest following eventually. And that will open opportunities even if it has to be outside the NHS for now.

Talk with them in a non threatening environment, find out how you can help spread the message to others who they think badly need treatment. Ask them what information it would take to convince their colleagues. Request their input without judging.

Network as you say, but whenever the opportunity arises feed results back to "the system". Let them know of yours and/or others successes. Make small incremental changes where you can and with time it will grow. Maybe not exactly as you currently envisage but that's what change is all about.

Hello Chejai and welcome.

To have an online consultation go to gp2u.com.au.

Dr James is not always available but there are other doctors and this is a very fast and easy way to get a script - no bus or respite care required!

All the best with taking the first step and the treatment to follow...

Hi Chejai,

It all sounds similar doesn't it!! I as well lost some pregnancies before I had J. He had some language proplems , didn't talk till 4 years old & had to see a speech therapist for many years.
No my son wasn't tested for he hep virus till he was about 3.
If yours was tested, he must be ok.
How old is he now?
My J was 3 weeks premi, they waited till then before getting him out. I had Cholestasis of pregnancy because of the hep and it was horrible.
I was so worried he'd be still born, and the rashes was unbearable, but nothing helped,I was too scared to have any meds in fear it may harm him, just had to wait till he was advanced enough for them to get him out. They monitored him constantly till the 37th week.

Did you get the Cholestasis? The HCV can cause this in the 3rd semester.

I read your story post & was so horrified at the treatment you got from your old specialist.
Glad you found Dr freeman, he's a good kind Dr.

Hope your tx goes well, and also your brother.

Love Cindi x

Hi Chejai,

Just read your story & am disgusted at the treatment you got from that specialist, what a creep, how dare he treat you like that.
You'll find Dr James the complete opposite, he's very compassionate & kind
.
I don't know why people like your past specialist choose to work in this field if they have those opinions.They should be wanting to help people instead of putting them down.

Anyway, glad you're on the right road now, you'll find the generics very easy to get through.
Soon you'll be free of the virus

Love Cindi x

Wow, Cindi reading your story gave me chills. I have had HCV for 34 yrs, i too had tried and tried for a child, many years ago. After losing 2, I finally got my awesome miracle boy, 13 weeks prem., now a healthy 10 yr old (with ASD). I always dreaded I may have passed it on to him but when he was born I was told he was tested and didn't have it. Was your son tested at birth?
I can't get over your CJ - we use that too, I'm 'C' and he's 'J'!
Wishing him all the best in his treatment

Thank you James Freeman, once i returned from that appointment i looked up this site and read that article and hence decided on the Sof + Dac treatment - noted it did say 12 weeks was recommended. I'm waiting to get back in to see my GP because she wanted to call the Specialist and discuss things with him. I was hoping she could write the script so that I don't have to travel to Brisbane - it's a big hassle a whole day, bus journey lots and lots of sitting around and putting my son in Respite Care I'll know within a week anyway.

Dear Dr Freeman,I was once married to a doctor,I have a brother who is a doctor,and several others that are close relatives that are medicos..None know I have this virus.One thing I learnt from them all was that if you have a serious illness always get a second and even a third opinion,so I hope in posting the following i am merely trying to add to the pool of knowledge and not challenging you in any way.
The folllowing is an email I sent some time ago to Prof Graham Foster,who you may remember is the author of the much posted you tube video. on Ribavirin.

"Dear Professor Foster,
I am writing on behalf of a number of patients here in Australia who have all watched your excellent you- tube video "which DAA's need to add Ribavirin."
And carefully taken note of your advice.

As f3/f4,f4 cirrhotic  Hep C patients.
We acceot a regime of 24wks of sofosbuvir and Daclatasvir or sofosbuvir ledispovir is necessary.
It has also suggested adding 12 wks of Ribavirin as being sufficient,and efficacious for max effect..

The question that concerns us is this,and we would like your opinion as an expert on Ribovirin
1. Is 12 wks of Ribavirin along with the 24 wks of the other DAA's  sufficient for maximum effect.
   In other words does 24wks of Ribavirin have any added benefit over 12wks if the other DAA's are continued for 24wks?

2. It has been suggested to us that it would be more efficacious to take the 12wks of Ribavirin in the last 12wks of treatment,rather than the first 12wks.
   Is there any scientific basis for this?
Since the range of possible options is up to us to decide we urgently seek a second expert opinion.

I apologise for intruding on your time,as I am sure you are extremely busy.
But your expert opinion would be very much appreciated."


To my complete surprise I received a gracious reply.

"Thank you for asking for my opinion
We don't really understand how ribavirin works and we don't really know the best way to use the drug so it is hard to give an evidence based answer.
My own personal approach is to recommend that for treatment regimes where ribavirin is needed (and for many Genotype 1 infections it is probably not needed with the new DAAs) the best thing to do is to take full dose ribavirin for the full course of therapy. This may be overkill and may (will!) cause a few more side effects but treatment failure is devastating and reduces future treatment options so I think most patients prefer to struggle through rather than have to go through a second course of therapy. 
If the side effects really are dreadful then stopping ribavirin early is clearly necessary and it does not seem to have major effects on response.
I hope this is helpful and am sorry to be so indecisive.
You will appreciate that I am writing in general terms with a personal opinion and you should discuss treatment choices with your doctor as the need and tolerability of ribavirin is very personal and differs from person to person
Good luck with your treatment
BW
Graham "

Maybe add riba to the last two weeks of treatment? Will that help?