I'm wanting conformation for treatment of Hepc 3. I have imported the new treatment via Greg Jefferys. I have mild scarring and lower than normal platelets. I'm taking a three way combination of Sofosbuvir/Daclatasvir and Ribavin for 12 weeks. Some of the information differs saying a 24 week course is best. Can you offer clarity on this.
Thanks Dr. Freeman. I had a fibroscan about a year ago and don't have my results at hand but I remember being shown the chart and I was on the very low end about a centimetre in to the left hand side; if that helps. The specialist at the Liver clinic wants me to have a Biopsy, which I'm avoiding. I have read that the fibroscan is a much better indicator of liver scarring??
The Specialist also said that it was hard to tell if I had any cirohsis as some of my blood tests showed I might; recent fatty liver deposits and lowish platelet count. But, some of them that I don't have scarring. He recommended a the 12 week Sof/Dac course. I have only imported 12 weeks of Sof/Dac - I also received 12 weeks of Ribovirin with the Sof from India.
After reading further blogs and different Pharma trial reports, I leant that people with cirrhosis only have a 68% clearance rate using the Sof/ Dac treatment for 12 weeks. So...I stated taking the Ribovirin two days into the treatment. I'm taking 2 x 200mg capsules twice a day.
I'm not sure if this is even the right dose to add to the Sof/Dac..
I have an appointment at the Liver Clinic tomorrow and hope to clarify the situation. I'm not sure how they will respond and want to treat me because I have imported my own Generic meds. What should I expect and ask. Should I insist on another Fibroscan? Will the result of the scan I had a year ago be sufficient?
I will read over the ESL report you attached too, I have read it before but I've got a bit of information overload at the moment and am feeling anxious about my interpretations.
I realise I've got my self a bit muddle with all of this and am learning every day. I'm sure it will get sorted. I would really appreciate your opinion before I go to the clinic tomorrow.
Thank you so much for your time and efforts.
Kind Regards, Vicki
Thanks James. I'm 57 very well and fit and weigh 60kg. My Liver test results this past week were very good surprisingly. I had my bloods a week before I started the Sof/Dac treatment.
The Liver Clinic had a very interesting reaction when I told them I was taking the Generics, but thats another story. They could not, or maybe would not, tell me what dosage of Ribavirin I should be taking. My fibroscan a year ago showed no scarring, though the clinicians suggested I should have a biopsy to make sure. As the only quandary is that my platelettes have been borderline for many years without change. Recent Ultrasound showed I do not have an enlarged spleen.
I stopped taking the Ribovirin that day and am just on Sof/Dac making up my own mind with the results I had at hand. I'm feeling good, a bit manic if anything, maybe it's just Spring fever.
One of the clinicians was very angry and berated me for being so foolish, irrisponsible etc, etc...but her Senior who was flummoxed at the information about the Generics and the Buyers club called the shot and said they would be very interested to keep on monitoring me.
I go back in 3 weeks, four weeks into the Sof/Dac treatment, it will be very interesting to see my results.
I have been corresponding with Greg Jefferys about visiting Hospital Liver Clinics and their sometimes very negative and naive reaction to patients taking matters into their own hands. Which is somewhat understandable. We must remember they are not the enemy, just unawares of a new groundswell. I'd like to start a new topic about Liver Clinics and share our stories and valuable information that could be beneficial for patients and clinicians.
We ants have numbers on our side!
I would consider recommencing the Ribavirin. There is quite a lot of evidence it improves the already excellent cure rates.
It represents a 3rd kill method.
If you were taking 800 a day without problem dosing at what you know was ok or the recommended 1000 mg a day as 2 tabs / 3 tabs would be what I might personally do when faced with the desire to optimise cure rate.
Funniest story ever Vicki - on Greg's blog. Friend and I think, when they make a movie of all this, that scene is a must. "We'd like to offer you interferon and riba."
Huon Valley, Tasmania
Hep C+ since 1980s
Started Indian Sof and Riba, BMS Dac (comp access) 28 August 2015
UND at 4 weeks
Finished treatment 19 November 2015
12 February 2016 UND SVR12
Here is video where Prof Foster explains in details who should use Riba.
Vicki if you have already started to take Riba, stick with it. You will have less chance second time around because of Riba resistance.
I saw that video earlier today & was wondering about this a lot.
As you probably know in the UK the standard tx for Geno 3 is Peg/Rib/Sof 12 weeks even for people who are tx experienced & who either failed or relapsed on the Peg/Rib tx before .
Not that this was offered to me as am apparently not ill enough to treat …I'd strongly disagree...
I have Geno 3 as well,
Geno 3, Fibro 8.7 pKA, tx experinced in 2005 - Peg/Riba, relapsed.
Started tx 1/12/2015 with Indian Sofo & Chinese Dac.
5 weeks result all normal, ALT 18 - down from ALT 73 at the start of tx.
5 weeks HCV PCR RNA - UND. - down from 2 ML
9 weeks HCV PCR RNA - UND.
It's all down to your fibrosis with this new Meds. Sof/Dac for 12 weeks for the naives with no cirrhosis should do the trick.
I was thinking to extend my treatment to 24 weeks because of my fatty liver and purchased enough Dac for that, but that may not be necessary and I probably will do 12 weeks only with no Riba.
Thanks Nadia and Jolie,
The video link was very informative. I'm in a real quandry about what I should do.
The only sure way I can find out if I have cirohsis is to have a Biopsy I'm told by the Liver Clinic. As mentioned my fibroscan last year showed no scarring but I have a small amount of fatty liver that has appeared recently.
Dr. Freeman has recommended that I take 1000 mg a day just to make sure. This makes sense.
Greg Jefferys recommended 'not' to take Ribavirin unless I'm absolutely sure I have cirrhosis, because of the nasty side effects. This makes sense.
The Liver clinic won't give me a Biopsy because I have started the Generic treatment which they the do no approve of.
I'm a performer and go on tour in 4 weeks and need to be really fit and well.
As they say in Showbiz "It's all about timing" and I think I've got my timing wrong.
When I first heard about the treatment via Greg jeffery on the 7.30 report. I was like a 'Bull at the gate'. I was learning that HepC 3 was hard to treat more aggressive and my age was putting me into the 'danger zone'. I was typing frantically to Greg while the closing credits for the show ran. I had the meds in a few weeks started taking them 'then' discovered this fantastic website and the forum.
So.....It's pill popping time and I skipped the Ribavirin.
Fingers crossed and may the force be with all of us x
If your fibroscan has showed no fibrosis then you you are a long way away from the cirrhosis. I also have mild fibrosis and slightly fatty liver and my consultant recons than 12 weeks Sof/Dac should do the trick with no need for Riba.
That;s great to hear Nadia. I'm feeling more confident about my decision now. What a steep learning curve, so much information.
Do you know much about taking vitamin supplements while on these medications? I am prone to migraine and started taking a magnesium supplement, which has worked wonders for me. I stopped taking any herb or vitamin supplements as soon as I started on 'the cure'. I usually take my magnesium in the evening. I take my sof/dac in the morning. I'm wondering if this would be ok?